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Success Stories

#1

Hi All,

Tammy had a great idea today – one I should have thought of a long time ago. She suggested we have a permanent place where people post their success stories. If some of you on mvertigo who are feeling well again could kindly kick this off that would be fantastic.

I think it would be best if only people’s stories are posted here and discussion about someone’s success take place down below. Also, if the person could report within their post how long they were ill with MAV, therapy used and the dose to get well, and how long the therapy took to work, that would be really great.

We definitely all need a place to check in occasionally to remember that there is a way out of this MAV labyrinth.

Thanks so much … Scott 8)

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Any success stories?
Thoughts on this recovery story please
My journey to Hell ... and (almost) back.
3 Years Today! :cake: :( :)
#2

I know how good it made me feel to read about people feeling better on these boards, especially when I was really feeling down and out. So, I wanted to share a positive story of my own.

I have been taking Cymbalta now since the middle of March (about two months) and I can honestly say that I am feeling about 95% on most days. The rocking when I was sitting or standing still was one of the first symptoms to go, followed by the dysequilibrium and the feeling that I was always veering to one side as I was walking. The heavy head, bowling ball feeling is also barely noticeable anymore. The brain fog and “mush head” feeling is so much better. I feel like I can think clearly and concentrate better than I have in a year. My headache situation is back to where it was before all the dizziness started, which is that I have a few mild headaches a month. Nothing that an OTC medicine can’t take care of. I feel less exhausted (even with my totally crazy schedule) and I have energy to take care of my daughter . I still have some dizziness around that time of the month but every month it is getting a little easier to deal with. And, at times busy, crowded environments (Target ) can bring on some weird visual dizziness, but it’s manageable now.

I am still being careful with my diet, although I have been able to loosen up a bit. I am much more conscientious of everything that I put into my system. I really try to avoid anything with MSG and I am pretty careful about chocolate and really limit my caffeine as well. I drink a ton of water and always try to make sure that I am eating at regular intervals…not eating seemed to always make the dizziness worse.

One of the biggest advantages to taking the Cymbalta has been the help with my anxiety over this condition. I am SO much more calm and rational. When I have a day where I’m not feeling great or if I get a little dizzy here and there, I don’t immediately go into panic mode. I say to myself now, “I’m okay, maybe I’m overdoing it”, or ,”I feel a little dizzy today, but tomorrow I’ll be fine.” And, I am fine. I realize now that I have probably always had pretty severe anxiety, but was always kind of in denial about how seriously it affected me. And, after the MAV hit, I was a complete mess. Now, that I’m not as anxious…I know how bad it was. I am able to enjoy life SO much more without all the worry and stress. This has helped my life out in so many aspects.

I know that trying to find the right medication SUCKS! I feel very lucky that Cymbalta was only my fourth trial (after Nadolol, Vivactil, and Verapamil). Like I said, I am not 100% but I am confident that I will continue to improve and I’m ready to stick it out. I know that all of you will find something that will work and give you some relief. Please don’t give up!! I was where all of you were at different points throughout the last year and I never felt like it was going to end, but I know now that it can be managed. You WILL all get there!! I hope my story gives you all a little hope today

Best,
Colleen

4 Likes
#3

Hi everyone!

It is possible to get better! I started having vertigo spells in May of 2008. I woke up on June 16, 2008 and felt dizzy, heavy headed, disequilebrium, nausea and I felt as if I was walking on a boat dock. I went straight to the doctor. Needless to say, I was misdiagnosed by several doctors, treated with wrong meds, and had every test possible over the next several months. I was anxious and just a wreck inside. My heart was racing daily and I felt as if I had no hope whatsoever. I cried daily and was housebound. Finally, I started physical therapy in October of 2008. I didn’t have much success with it, a little but not as much as I had hoped. That is when I heard about Dr. Hain. Not only did my PT suggest him, but many on this forum did too. On December 18th of 2008, I did a phone consultation with him after sending him all my records. He started me on Verapamil; I finally had a diagnosis with a plan. I met with him in Jan. of 2009 for a follow-up. It took me 7 months to get on a preventative and find the “right” doctor and almost 3 1/2 months on the med to get to 100%. It was a gradual process.

I started on 1/4 of a Verapamil capsule sprinkled on applesauce before bedtime. I gradually increased to 1/2 then 3/4, then whole (120 mg). I did this over a period of a few months. Gradually, my symptoms started to disappear. First thing to leave was the heavy headed/bobble head feeling, the nausea left too. I did have flareups and felt discouraged along the way. But…by April of 2009 (3 1/2 months into the med), I was at 100%. Even the symptoms that used to worsen around my period were less. I don’t really fear “that time of the month” anymore. My worst day is now a 90-95% day. My worst is not enough to make me lie down or anything like that; it isn’t enough to make me stop my life or anything.

Bottom line -

I believe this fades with time, the body adjusts, meds can bring it into “remission”, hormones and diet and weather along with stress are triggers. I believe that it is possible to have MAV without the migraine, I did. I have a history of spring time cluster migraines, but since the Verapamil, my headaches didn’t come this spring. And…the whole time I was dizzy, I didn’t have migraines at all. I no longer lie down during the day, my energy is back, I am living again and you will too!

I don’t know why we have to have “sensitive” brains that pick up on every vestibular change or why some of us get migraines. I guess we are wired differently. I have finally accepted that fact. But…I have also accepted the fact that we can and will get better. This too shall pass my friends; keep the faith and have hope. I thank God everyday for my recovery and you are all in my prayers. This forum helped me more than anything. Thank you to all of you from the bottom of my heart.

Nance

4 Likes
#4

Hello,

This isn’t my own story but a close friends. I recently posted it elsewhere on the board but thought I should put it here so it’s a permanent fixture.

I have a friend I met on the healthboards years ago. She was very, very ill with MAV. She is a nurse and was off work for a year, very disabled by the condition. Her symptoms were continuous 24/7. She had a prior history of migraine but never with dizziness and then the MAV suddenly hit out the blue. She started with violent nausea and spinning, which then devolved in to much of the usual stuff, brainfog, dizziness, vertigo, weird visual distortions etc…

She was initially misdiagnosed with VN, did VRT, which only made her feel worse. She heard about MAV (had a prior history of migraine headaches) and suggested to a neurotologist that she might have it. She tried amitriptyline and propranolol and only experienced side effects and no improvement. Then she tried pizotifen. She very quickly started to get better but the pizotifen initially had a depression side effect. The dizziness cleared but for 6 weeks she was so depressed she didn’t even feel happy about it. After six weeks the depression side effect lifted and the dizziness was still gone. She stayed well and stuck with the pizotifen for about a year, then came off it.

She has been pretty much 100% ever since and that was about 4-5 yrs ago. Very occasionally if she is ill with something else or is very tired, she might get a bit of dizziness. She also sometimes gets regular migraine pain but for the majority of the time she lives a totally normal, dizzy free life. She eats what she likes, works full time, even does occasional shift work at night and has a busy social life.

I know they say migraine isn’t curable and it’s true, she still gets some migraine activity, but the year of her life spent dizzy and vertiginous and miserable twenty four seven is over and has never returned. I think it’s also heartening to know that initially the drug that broke the cycle caused side effects but ultimately came good for her.

Anyway, let’s hope there are many, many more of these success stories, including my own.

Hannah

7 Likes
#5

Hello,
I am so excited to have found this board…I used to be on another board and came across this one recently. I saw this success story post and just had to share because I remember needing to hear successes to have any glimmer of hope of getting through the difficult times of MAV.

My story:
In 2004 I got pregnant with my first child. About 4 months into the pregnancy I woke up with extreme vertigo and nausea. It subsided only to leave me with constant dizziness for the rest of my pregnancy. Chalking it all up to hormones, I never told my doctor. At the time I was still functioning. Right after giving birth the dizziness just got so unbearable…vertigo, rocking boat sensations, heavy head, air balloon head, feelings of falling, ringing in the ears, floating sensations at night. It was AWFUL as you all know. Serious sleep deprivation only compounded everything (my first was a horrible sleeper). I became housebound, lying on the couch and occasionaly the floor to play with my child. Finally at three months post partum I was so anxious and depressed and just plain fed up with people telling me to just “give it time” that I went to the doctor. They thought it was fluid in my ear…sent me through lots of tests, MRI, hearing and other ear tests and still nothing. I was such a mess by this point that they put me on xanax and a few weeks later Lexapro (thought it was post partum depression). I knew deep inside that it was something else and continued to research. I found MAV and KNEW that is what it was. My long history with migraines and motion intolerance just fit. So, I presented it to my doctor who was still convinced I had PPD. The Lexapro began working and each time I upped the dose (starting at 10, then 15, then 20) I noticed different symptoms going away. I was able to taper off of the Xanax after being on 10 mg. of the Lexapro for a few weeks. First to go was the rocking boat. Then the blurry vision. I started forcing myself to walk each day (fortunately I had the stroller to hang on to). Around the block was a huge accomplishment and eventually I was able to do two laps, then go to other blocks in the neighborhood. As soon as I started feeling symptoms I would turn around and go home. The grocery store finally called me and I made it through…with much dizziness, but still, I made it!! Eventually I was able to grocery shop with no problems at all. It took a good 3 months of staying at my in-laws before I was able to go home and function on my own. I say function because it was still a struggle…but I pushed my way through. About 6 months into the Lexapro I was feeling about 80% with symptoms mostly right before my period. What a miracle it was! After a full year I was 100%.

I was able to tapper off of the medicine a year later. It took me a full year to tapper, but I felt great!! I was able to be completely med free for the next year. Then I braved getting pregnant again, something I swore I would never do again! The second pregnancy was so much better. Lots of morning sickness:), but no vertigo until the last month. I really thought I would be able to nurse this time and not stop to take medicine (my first had a HORRIBLE reaction to the Lexapro and I had to stop nursing, so sad to stop, but so worth it). I felt great for the first three days after giving birth and everyone was commenting on how much better I looked this time around. No crazy hot flashes, no extreme vertigo. Then on the third day (right when my milk came in… a new hormone surge…the dizziness came back. It wasn’t too bad so I thought it would still be okay. It kept getting worse and by the end of the first week I was back at the doctor, but this time I knew what it was and asked for Lexapro. Started on the 10mg. again and noticed a huge improvement right away. I was still having lingering symptoms, so I upped the dose to 15 and then 20 and began a speedy recovery. Within a month I was totally functioning and today I feel great. I only get symptoms right before a migraine, or the few days before my period. What a relief!! I am hopeful that after a full year on the Lexapro again that I will be able to taper off. I had to stop nursing again, but again, it has been so worth it to preserve my health and my family. I am enjoying the baby stage so much more this time around since I feel better and am already considering a third!! Crazy yes, but I just love my little ones.

That’s my success story. I remember very clearly how awful this disease is and how you feel like you will never get through it. That you will be stuck in a vertigo time warp forever. From this I’ve learned to be aggressive with doctors and to be your own advocate. They are used to seeing “normal” cases of dizziness, and most GP’s have never even heard of this form of migraine. Don’t let them tell you it’s just depression or anxiety…it’s so much more. And make them refer you to a neurotologist. I finally saw one 6 months into the meds just because I HAD to have a professional diagnose me, I guess to ensure to myself that I was not nuts. Best of luck to us all as we continue this lifelong battle with vertigo.

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#6

I’ve been in a quasi-remission mode for a while, and it took a loooong time to get there. Tried a lot of things, and finally hit stride last year.

Here’s a breakdown:

Came down with this in early 2005. Started with a virus, and was exacerbated by head trauma.

Medical intervention. Started with a GP, then an ENT. ENT thought it was neurological, so he sent me to a neurologist. Found a few things after testing with the neurologist, but nothing real significant. Went to another ENT, who also thought it was neurological. Wife found me a good neurotologist, who was pretty sure I had Meniere’s. By that time, I had lost my career, and the neurotologist actually advised me not to continue in my career, as it required a lot of travel and unusually long hours. He felt I could improve, but first things first…I needed assistance to walk for some of that period.

Treatment consisted of low salt diet, dyazide, and valium for that year. Was partially disabled during that time. Did a lot of freelance writing for several publications. Some days, I could get out of the house and do some things. Other days, I couldn’t do much. Balance was real bad.

The neurotologist who thought I had Meniere’s died in late 2005. Went to another neurotologist in early 2006. He agreed with the previous doctor’s diagnosis. I had also demonstrated during doctor visits that I had an audible clicking in both ears, which could be heard from as far as 15 feet away when it was firing full tilt. Suggested to the doc and audiologist —through my own research----that I probably had a palatal myoclonus. Both would not confirm it for me. They just didn’t have that kind of training background. As I’ve learned, that’s part of the territory with these ailments. The difference in training between doctors can be staggering. Some are very well meaning, but just don’t have the training background. Others are closer to the cutting edge.

Ok…back to the grind. Tried some acupuncture during the Spring. It would relieve pressure for a day or two, and then the symptoms would creep back in. As far as further conventional medical treatment, pretty much the same treatment plan, but added VRT and the Meniett during the summer of that year. Improved a little bit. Started working part-time out of the home in early 2007, and also went through some more alternative therapies. Was able to do some jogging for the first time since late 2004.

Went for another opinion with a neurologist during the summer of 2007. MAV diagnosis, and felt Meniere’s could be lurking in a parallel fashion. Confirmed palatal/stapedial myoclonus. Verapamil & Serc were prescribed along with low dose valium and a low salt diet. Dropped Serc after a few months. Responded well to verapamil. Re-entered full-time workforce—albeit at a drastically reduced pay scale in a slow paced occupation—in early 2008. From the summer of 2007 to March 2008, went from 120mg to 240mg of verapamil. To this day, along with valium, it has been the most effective drug for me thus far.

Ran into some problems in March 2008. My ear tubes came out (for the Meniett), & I started experiencing an increase in ear pressure. Equilibrium and balance started going downhill. Neurologist thought it could be indicative of a fistula, but he kind of disappeared after that. Sought another opinion in May 2008.

Going into the May 2008 appointment with the new doc, I really felt MAV was at the crux of the problem, but I thought it could very well be an ailment accompanied by SCDS, not Meniere’s. Everything just seemed to point to it. I really felt I’d go to that appointment, get a confirmation of MAV, but also with a CT scan of the temporal bone to point to SCDS. Appointment with new doc went “ok”. He felt it was MAV, Cervicogenic Vertigo, possible SCDS. He felt physical therapy was the best conventional treatment for me, and scheduled a VEMP test. Didn’t think he could do much for me outside of that. I decided not to pursue physical therapy, and canceled the VEMP test. I’d had a VEMP test in 2007, which came out clean.

On the advise of a few fellow Meniere’s patients, I went to a new neurotologist during the summer of 2008. Went into the appointment with a healthy dose of skepticism. Gut instinct told me this was the end of the line.

I was wrong.

Within 10 minutes of the 40-45 minute appointment. I knew I had the right doc. Whereas in the past when I silently finished the sentences of so many docs, this doc was a step ahead of the curve at all times. Completely and totally professional to boot. He confirmed the palatal myoclonus diagnosis. He confirmed the MAV diagnosis. He confirmed the cervicogenic vertigo diagnosis. He was skeptical of Meniere’s, and scheduled a battery of tests. Started me on a disciplined physical therapy regimen with a great, super sharp PT.

After testing, the diagnosis was MAV, Meniere’s, Cervical Vertigo, & Palatal Myoclonus.

New Treatment Plan:

Verapamil - 240mg
Effexor - 37.5mg
Valium - As needed
Low Salt Diet
Intensive Physical Therapy

Big improvements since then…at the ripe middle age of 45…and after several years of struggle.

At this point in the long circuitous journey, I now run 70-90 miles per month. I’ve actually been able to run a few sub-12 minute 2 milers. Strangely enough, I know I’m capable of going faster. Those were **not **done at 100% maximum output. My weight was also about 190 pounds. If I can get into the high 170s—which will be a task…LOL—I’m somewhat certain I can flirt with the 11 minute barrier on a real good day. My wife and I will spend our 20th wedding anniversary in the North Carolina mountains where Lance Armstrong trained after his initial surgeries and recovery from cancer. Supposed to be a beautiful, almost utopian place. Hope to get into the high 170s at that point, come home, and break that 11 minute barrier. Planning to run a half marathon in September.

Besides the running, I do about 6,000 crunches per month. I do a lot of work with exercise/resistance bands instead of weight training. It’s nice to be “physical” again!!!

Working full-time is not a problem for me anymore, although I’m not 100%. Still looking for that completely symptom free state of nirvana (LOL). What’s more, hoping the economy clears up a bit so I can re-enter my previous occupation, but not at the same level I was before. I’d be pleased with 2/3 - 3/4 of the salary…not the 1/4 I bring in now.

Lots of potential…lots of hope.

Hang in there.

4 Likes
#7

I started getting symptoms 3 months before I got married in 2003 and then 24/7 in January of 2004. I am now 37 years old. I had constant blurred vision, mild nausea, anxiety, and dizziness where I felt off but no true vertigo or spinning. I was not diagnosed for 2 to 3 years but was given Zoloft for anxiety and that got me to 80%. I was diagnosed by a neuro-otologist who tested me and said I had a vestibular disorder. I tried VRT excercises for 6 to 9 months but was still 80% so he referred me to a top headache Dr in the NY Metro area. The doctor added Verapamil and with 6 months I was 95% to 100%. After being stable for 6 months longer I tried to come off the medication as I had gained some weight… I was good for 6 months more and then had a total relapse… So I went back on the drugs and now a year later at higher dosages: 100 mg of Zoloft, 360 mg of Verapamil and 0.5 mg of Klonopin, I am 95% to 100% most days. I still have my days where I am triggered by weather, alcohol, sleep, and anxiety, but I am pretty normal. I will not change anything for at least a year and maybe one day lower the meds a little. I will always be on something. I work full time and go out with family and friends. I have one son with 2 more on the way.

There is hope, but it takes patience and you have to be willing to try a medication and ride out the side effects. Klonopin helped me do that…

Best to all.

2 Likes
#8

Hi guys, Rich here. There is so much but I’ll try to be brief for “readability”. January 24th, 2008 I had a complete and total MAV crash. I woke up that morning with at least a dozen symptoms - 24/7 dizziness, motion sensitivity, visual sensivity, valsalva-induced dizziness, pressure in the ears, nausea, flu-like feeling, visual distortions, feelings of walking on a trampoline, feelings of “falling”, feelings of being shoved, vibration feelings in the head,…the symptoms go on and on. I was diagnosed very quickly, within a few weeks. I was on top of this, and went from doctor to doctor. My 2nd doctor felt it was migraine and wanted to put me on topamax. Stupidly, I didn’t believe him and chose to go to Johns Hopkins which took a few months to get in and get things moving along. In the meantime, I went back to another doctor I had gone to for some other issues and he felt this was all anxiety, so he put me on depakote and klonopin. I had horrible reactions at miniscule doses so I stopped them. I finally got into Johns Hopkins and after all their testing, the diagnosis was migraine. So, I tried pamelor and elavil, but couldn’t get past starting dose. I tried effexor but couldn’t get past starting dose. I was then put on topamax, which was the drug that the first doctor who diagnosed me wanted me on, and I could actually tolerate it as long as I went slow, so I felt it was important to stick out the trial, since it was the first drug I was tolerating. I had a lot of side-effects along the way including breathing problems at one dosage, but I lowered it slightly and all the side-effects went away. After 4 months, I went from barely being able to walk 5 feet without having massive symptoms, to being fully functional once again at 90%-95% on most days. I have a permenant visual impairment that causes me to see the whole world constantly shifting around slightly, which is why I say I am not 100%, but it’s only slight, and I ignore it most of the time. If not for that, I’d be 100%. I feel very fortunate to have found a medication that worked for me. It took the full 4 month trial to get there, but the results were amazing. It used to be that I might have a decent day and then 4 weeks of hell, then a decent day, and then 3 months straight of hell. Now, I have months of normality, and sometimes I get triggered by lack of sleep which will upheve some symptoms for a few days but I can still function. It’s nothing i can’t handle. The weather doesn’t even affect me unless the rain is here for 5-7 days in a row. It’s like a brand new lease on life. Extreme motion (roller coasters, cruises) are still an issue but so what. I couldn’t even walk last year. Now I"m running. This condition DOES get better. It’s just a matter of not giving up, and continuing to trial meds until one med or a combination works. I’m only on 50mg of Topamax, and the minimum is usually 100mg. So I feel fortunate not to need so much to get the results. At 75mg, I can’t breathe, so that’ s a good thing. It induces asthma at the higher dosages. Life is good now. I also know of at least 2 others not on this board, and not mentioned on this board, who have gotten well with topamax, or another MAV drug of some kind. Stay with it, life gets better again :slight_smile:

Rich

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#9

I thought I would post my success story, partly to share with you all and also to remind myself that I did once make it out of this hell hole of an existence.

So I was misdiagnosed as having VN/Labs from Aug 2005 - Sep 2006. Once I found a decent doctor she put me on Pizotifen - and within 2 months I was already feeling a lot better. By the following March I was pretty much recovered with a few blips here and there. By Sep 2007 I was so well all the time I decided I didnt need meds anymore, so I ceased all Pizotifen (I was also a fatty because of it and keen to lose weight).

Let’s fast forward 8 months - still med free and 100%. That’s right, still WELL without meds. It can be done!

On April 25th 2008 I had a major crash - I started feeling dizzy and nauseous while in a car and well … I’m still dizzy with all the same symptoms a year later.

I tried Pizotifen again and it didn’t work this time round sadly … :frowning: . Don’t ask me why as I have no idea - all I can say is it was heart breaking to have it back with no solution…AGAIN.

SO far I have tired Epilim Chrono, Ami & Verapamil with no success. I’m seeing Hain in August for a 2nd opinion. Until then it’s a waiting game.

I hope this gives you so hope that, with the right meds, you can be better and be “normal”.

Best of luck,

Luke

1 Like
#10

HI guys,

Hopefully it’s not too early for me to declare myself well, but for the last three weeks or so I’ve been pretty much MAV free.

I’m on 75mg of Prothiaden/Dothep daily. It took a few weeks to kick in and then I was about 80-90% well on any given day. The only side effects are dry mouth (no problem, I drink a lot of water anyway) and some weight gain. :frowning:

Cheers,
Victoria

#11

I posted on the other board and thought I should share my story here too. The success stories were very helpful to me during my darkest days - and there were many.

Quick story: I’m a physician who got dizzy 3 mos after having 1st baby but got better, then got very dizzy/vertigo 3 mos after having 2nd baby, life came to screeching halt. Bouncing vision, phono-and photophobia, nausea, really couldn’t get off the couch most of the time. Heavy head, pressure, throbbing, motion sensitivity, you guys know the symptoms. After testing I was diagnosed with significant bilateral vestibular loss but didn’t get better with time or VRT. Meanwhile, I’m not able to take care of my two-year old and baby and definitely can’t work and wasn’t driving. I was lucky that I was able to receive some disability pay because they couldn’t argue with my abnormal test results or the dismal notes my physician and physical therapist were writing. This went on for about 7 months.

Then I went to my third neurologist as my last ditch effort to try something new (bad storm that day, so I was even more miserable than usual). I started a combo 5mg Librium/12.5mg Amitriptyline pill (called Limbitrol) and (about a week later) 5 mg/day Lexapro. I was skeptical b/c I had already tried nortriptyline and verapamil with no improvement. I felt better within days and continued to improve. I have just returned to work full-time and am doing great. My job requires a lot of time looking in a microscope and it doesn’t bother me at all now. Before I improved, I thought my career was over because I couldn’t even look at a computer screen. I went to the movies recently and had a great time, go to the grocery store, play with my kids, etc. Before, I barely left the house. I was never depressed or anxious when leaving the house because I figured “what’s the worst that can happen?” I just was really sick.

Whatever med works for you, I recommend a no fear attitude with this (with the notable exception of driving, etc - doing something that can actually kill you and others). When this started, I had a bad vertigo attack when I was on a busy city highway with my baby in the backseat. Now if I hear that Carrie Underwood song “Jesus, take the wheel” I start crying (and I’m not even religious). I feel like I used up my luck getting out of that one, so I am very careful about driving on bad days.

I stopped the Lexapro b/c I didn’t think it was doing anything positive. I replaced it with 37.5mg Effexor a few weeks ago and I think it’s helped me get even better. I don’t have any side effects except that I’m less sleepy than I was before. I think I would have insomnia if it weren’t for the Librium/Amitrip that I take in the evening.

I still have bilateral vestibular hypofunction, but that mostly manifests as bad balance and is not disabling like the MAV is now that my brain has mostly compensated. I don’t walk across dark rooms, can’t do a lot of things with my eyes closed, and have occasional periods when the bouncing vision (oscillopsia) is worse. I’m continuing VRT for that. I found out it was the MAV that was killing me. I can now read all day, be on the computer for hours, and no longer am adjusting the brightness on my TV or drawing the curtains. I also bought a great pair of Oakley polarized sunglasses to cut down on glare when outside. I still don’t eat aged cheese or MSG b/c I haven’t been able to rule out that those are triggers for me. I do drink a little caffeine and eat chocolate, nuts, and fresh-baked breads. We don’t buy many packaged foods. I get the good American cheese from the deli counter and use that in my portion of casseroles, homemade pizzas. Maybe later I’ll try cheese, but I don’t want to mess up a good thing right now.

I’m so happy to have my life back. I’ve been doing 95% better for nearly three months and am very optimistic about the future. We had a great time celebrating my baby’s first birthday a few weeks ago. I felt like we were also celebrating returning to normal as a family.

1 Like
#12

I wanted to write my story on all the major dizziness websites to enlighten you, encourage you and prove to you all that there is a way out of the dizziness hell hole!

My dizziness journey began in February 2006 when I was 6 weeks pregnant with our first baby. I was a fit and healthy 26 year old with minimal previous medical history. The spinning vertigo attacks would came out of the blue and were terrifying and debilitating to say the least. In between I would feel spacey and incredibly dizzy and generally unwell. Both the GPS and the midwives were baffled and put my symptoms down to pregnancy.

The birth of our son Isaac in the November of that year proved to be a pinnacle for the dizziness, unfortunately in the sense that things became much worse. I was spinning almost 24/7 and some days I would just faint all day or feel incredibly out of it. The GP tried to diagnose me with depression, but im a hearty woman and knew I defiantly did not feel depressed just unwell!

I am now told I am one of the lucky ones as I did have a diagnosis at this point from an ENT consultant who believed it to be an inner ear problem. This was great as I was at least respected and not treated like a loon, as im told so many people with chronic dizziness are. I was given exercises to do and told that things would improve. However they did not, they just got worse! I spent the good part of a Year in bed and it was only by chance that a friend mentioned the term a neuro-otologist! This happens to be someone who specializes in dizziness and is a consultant who has in fact completed extra training on top to specialize in this key area.  

I am so passionate about this as I did get the right diagnosis in the end and my condition was easily treatable. This has been the worst three years of my life and I know im only 28 but I had already experienced some tough things as my brother committed suicide and our family was not the best, but I have to say this illness really took me to the edge and back. I am a midwife and my husband is a surgeon and none of our medical friends have heard of neuro-otologists, so I dread to think what the general public understand in regards to this matter. Dizziness is so common, that I feel it is important and fair that people know they exist.

One of the main problems neuro-otologists face are Neurologists and ENT consultants who feel frightened of this specialty as it takes a lot of their business, whilst lowering their self esteem as they claim to understand dizziness too. They do indeed understand a fair amount in regards to dizziness but they specialize in other areas. It is such a shame that they do not see this change as positive rather than arrogantly carrying on blindly.

If I can spare just one person one dizzy day in bed then my illness has been worth it. There are over 300 causes of dizziness, many easily treatable and if not cured then well controlled. I gave away over two years of my life to an illness that if had been diagnosed earlier could have been treated within a matter of weeks. I cannot impress on you enough that if you have chronic dizziness that is not improving please see a neuro otologist who will give you a correct diagnosis, therefore leading to the correct form of treatment for your illness.

The Consultant I saw was Dr S. S Surenthiran who has been fantastic. He is one of the best neuro-otologists in the world and is just opening a major balance centre in Fitzroy Square London, he also has clinics at The Blackheath Hospital.

I know a lot of people go to see Professor Linda Luxon, but having spoken to many dizzy sufferers her success rate of correct diagnosis seems to be poor and her overall patient care a little dated! I did have dealings with her myself personally and she too misdiagnosed myself. I have added this in as I feel too many people out there are so vulnerable when they are unwell and end up stuck with a wrong diagnosis and dont push any further than Professor Luxon.
I am back working as a midwife and doing ballet and most importantly LIVING! I promise there is a way! Just remember to follow the light and ignore the dark cracks along the way. Lara


edit: I asked Lara what her treatment was and this is what she said.

I started on amitriptyline, the MAV diet and sufficient rest/hydration. I also started to wear a hat and sunglasses everywhere as this helped with the light sensitivity immensly! I am now on 70 mg of nortriptyline. The doctor thought the side effects would be too great on amitriptyline. The diet works wonders for me too but if i stray onto anything with flavourings, yeast extract, or barley malt extract, which you are probably aware are all forms of MSG, it brings on varying symptoms! I now go without a hat and glasses and most of the time notice no symptoms! I can get dizzy after too many pirouettes but I’m not going to moan about that!

New member posting for help, relief and answers
#13

— Begin quote from “nance”

Bottom line -

I believe this fades with time, the body adjusts, meds can bring it into “remission”, hormones and diet and weather along with stress are triggers. I believe that it is possible to have MAV without the migraine, I did. I have a history of spring time cluster migraines, but since the Verapamil, my headaches didn’t come this spring. And…the whole time I was dizzy, I didn’t have migraines at all. I no longer lie down during the day, my energy is back, I am living again and you will too!

— End quote

This pretty much sums my thoughts on the subject.

Scott and Adam knew me from the other boards, and I was clueless, sad, and in despair.

Yes it fades with time, the brain adjusts, and the better the attitude you have, the better you feel, I promise you. I didn’t believe this could happen two years ago, and it did. YOU CAN CONQUER MAV.

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#14

Hello everyone,

I came to this board back when Adam first started it. I have tried everything. I could not tolerate any meds for the MAV and for the past 8 years I’ve been sick. I belong to another board where I kept reading about NUCCA, they basically adjust your C1 vertebrae. It took me 2 years to be convinced it would do any good. A member of the board I go to said, here is the name of my Dr now make an appt. I’m taking you. I made an appt. but cancelled it and waited another 6 months to go. It was the best thing I ever did as I’ve been feeling so good. When I went in I was feeling that bad hungover feeling that was pretty much my life most days.

After I got my adjustment which felt like no adjustment at all, I noticed that the side of my face flushed and that’s it. The best part was when I got off the table my hangover was gone. I woke the next day and was amazed when I got out of bed that I didn’t need to sit on the couch for an hour just to get going. I’ve been going for a month now and and my dizziness has been 80% better. I have tried everything else and wish I would have done this 2 years ago. My neck was a trigger for my MAV, but I still do the diet. I hope this will help someone else. The NUCCA Dr. helped my friend with his MM and his wife’s trigeminal neuralgia, some of the worst pain one can experience.

#15

I consider myself very lucky – I seem to be on route for a success story, and a very quick success at that.
I was diagnosed with MAV when I visited a neurologist in February this year, after increasing symptoms over some years had reduced me to a dysfunctional, miserable, confused blob (story told elsewhere on the forum). I was prescribed 10mg Amitriptyline which made a difference within days, although I bounced around for a few weeks with some good days in between majority bad days. Having given up work because of MAV, I made a conscious decision to take things easy - luckily my personal and financial circumstances are such that I’m able to do this - (a) I have a very understanding husband (b) we can scrape by for a while without my salary © my children are fairly independent (18 & 20) and (d) I don’t have any elderly relatives to care for. These factors make a difference I know. Just three months on, my Ami dose is up to 20mg each evening and I seem to have my life back. I’ve even been well enough to take up some part time work again. I’m virtually free of the worst of the debilitating symptoms I was suffering. I’m rarely dizzy, I can concentrate, I rarely have visual problems, my balance is ok-ish, I can cope with supermarkets, I’ve had very little head pain the last few weeks, I’ve been able to socialise again, I don’t feel like I’m under water any more – the list goes on. It crosses my mind sometimes that the efficacy of Ami might fade, but for now I’m enjoying life again. My heart goes out to the many MAV sufferers who haven’t found such a quick solution, but I hope that my experience can give some hope to those just starting out on their journey to find wellness. I seem to have been very lucky and maybe you will be too.

#16

Hi everyone,

Today is my first day on this site and I wanted to share my story. I started off in Aug of 2009 with a bad head cold. After about a month or so I couldn’t shake the mum feeling in my right ear on and off so I went to and ENT who told me it was my U tube, put me on Flonase and it did clear up that feeling until a week later when I woke up in the early morning with severe vertigo. After a few hours it stopped but then I started to feel major worry and anxiety that it would come back. I went back to the ENT who told me that I now havd an inner ear infection and there was nothing I could do but wait it out ! HUH!! Wait it out ??? I was on the love boat for about 2 months untill I finally took matters into my own hands and found a neurologist who did an MRI and tilt test on me to find out they were both negative. Thank god !! However, since these tests came back with nothing to go on he told me my problem was MAV. I have been on Celexa since early December now and it has me feeling about 95% better untill my period time of the month. Currently my symptoms are just an off feeling in my head at times throughout the day when I get stressed at work or at my son’s hockey games. I can function so I am thankful for that! I do still get ringing in my ears because they are still sensitive from the vertigo but my doc says that will pass with time. I have hope that I will recover from this episode. Unfortunately I am by nature a stressed out person so I guess only time will tell. I’m just sick of worrying about it and at times make myself crazy trying to fully understand this MAV. :smiley:

#17

Hello,

I am writing this with little knowledge of this forum, so I apoogise if I am posting in the wrong place!

I have a recent success story and would very much hope that by sharing it I may be of some help. I first suffered with vertigo and associated headaches and neckaches in 2004 whilst in Canada. I put this down to altitude at the time but now realise it was MAV. I had another two bouts shortly after returning home, but was told by the GP that I had BPPV, for which I took medication for a while. These then stopped and I didn’t have another episode until 2008. Again, the symptoms (unbalanced, lightheaded, sensation that i was moving) seemed to be associated with headaches and very bad neckaches. My ENT specialist and neurologist couldn’t find a cause (also had an MRI scan: Normal). I visited a chiropractor for my neck and shortly afterwards the “dizziness” went. But in July 2009 I had a sudden attack of vertigo and was unwell for about 4 weeks, the diagnosis then was labarynthitis. The dizziness stayed with me until about 8 weeks ago. During that time the episodes were linked to headaches but also occured when I didn’t have a headache, also the visual vertigo seemed to be getting worse. For a few months I kept a diary, which I highly recommend, as it was this that prompted me to suggest to my ENT specialist that I had migraine associated vertigo! I was prescribed PIZOTIFEN and started on 1 tablet a day (0.5mg) (you can take 3 a day) and to my greatest relief this has worked. At certain times of the month I get headaches but this can be controlled by Ibuprofen. I would also like to share a fact that i read in an excellent book written by Adolfo Bronstein (Professor at Imperial College) that “migraine is the most common cause of recurrent vertigo”. He also has a section in his book on suggested medications and a section on vestibular rehabilitation.

I hope this will be of help, as I know it is a living hell to wake up every day knowing your head isn’t right.

#18

I’m new to this board…had no idea of this condition MUCH LESS there was a site for it! I’ve been sick for the past three months (actually to THE exact day today). Mine started with a cold on May 9 and an inner ear infection. Many steroids and antibiotics later from my GP, I sent myself to an ENT. Even though I have an ENT friend, I went to the one in the same practice that specialized in nose reconstruction (formerly a PS) so he could give me a cute little nose while fixing my “dumb sinus problem”. He sent me next for a cat scan as soon as they could get me in (5 days…ugh!). After 2.5 months of throwing up daily, 5 days is a lifetime. :frowning: Then, “you’ll have to wait for the results.” Which made my husband call (I was too nauseated to talk, and can you TELL how much I like to talk???) and demand they send my Dr the results IMMEDIATELY. Come to find out, they had sent them the same day and the dingbat nurse was putting me “on the list” of appts. More phone calls to my husband and he got the Dr on the phone who said he was sending me to their ENT that specialized in inner ear problems. Well, this Dr also happens to be a good friend (we coach our daughter’s together in soccer). Anyway, he gave me the initial tests and listened to me tell him I had inner ear fluid and that my sinuses were clogged and listened to all my other symptoms. That’s when he said, “I think you have MAV.” WHAT??? Whatever! I HAVE fluid in my ear. Is he listening??? Then, he gave me AMITRIPTYLINE (37.5 mg x1/day) and VALIUM (2mg, 2x day) plus Zofran & Phenegrin as needed. He told me he was referring me for further extensive testing by the audiologist. They scheduled me for their next appt…25 days later. Ummm…NO! Husband made more calls, then they got me in within 3 days. Had to be 3 days because NO MEDS allowed for 48 hours (almost lost my ever loving mind!).

Anyway, all test results now in. Meds started as soon as I got into the car after testing and for the first time in 3 months, I have not thrown up or been nauseated for 3 days (again, a lifetime, it seems!!) with not one of the Zofran or Phenegrin taken!! The dizziness has gotten better but not completely gone. Apparently, the amitriptyline takes about a week to completely get into your system so it has 4 more days!!! :wink:

#19

Success stories are nice to read so I thought I would post mine, even though it’s a story in progress.

In December 2004 I fell and hit my head quite hard. Soon afterward I started having dizzy spells and headaches. My GP sent me for some testing that revealed an occluded right vestibular artery. Further testing at an ENT clinic proved unremarkable so I was advised to wait and see. Over the next year the incidence of disequilibrium increased along with some vertigo and strange symptoms I now recognize as migraine aura. Returning to my GP he referred me to a neurologist who did some testing and ordered a complete ENT workup. After the testing I was informed that the occluded artery probably had nothing to do with my symptoms and was permanent, also there was no pathology for my symptoms and therapy might help. My GP ordered the therapy and it seemed to help for a short time. Over the next 4 years my symptoms increased to the point that I was no longer able able to walk unassisted, I was seasick 24/7 and experiencing very strange headaches and various stroke like symptoms for which I was hospitalized several times. About 8 months ago some friends took me to a concert at a church and I suddenly experienced a severe stroke like event along with chest and head pain. I was taken to a hospital by ambulance where a neurologist was called in to consult and that man changed my life. He told me simply that he did not know how to help me but that he knew someone who he thought could and he gave me a referral to a dizziness clinic. Five more ENT tests to rule out some possibilities and a few months later I was prescribed Topiramate 25 mg to start. The results were nearly immediate; for the first time in years I woke up without wishing I hadn’t. After a month I went to 50 mg and am now on 75 mg. I take a lot of other medications for other conditions and there seems to be no interactions, at least so far. My life is near normal, disequilibrium still happens but is minor, and the silent migraines are still there but I am learning to deal with them and they are no longer disabling.

All in all I had been to 7 different doctors and 4 clinics over 5 years without getting any help. I had given up and was about to lie down. To be honest it took my dear wife some tall talking to get me to go to that dizziness clinic. What could they do after those world famous clinics could do nothing? Five years of 24/7 sea sickness is a lot to take. I praise God for that small town neurologist. I have a life again.

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#20

hi everyone, ive been struggling with MAV for over a year now. it started with what was diagnosed as two bouts of benign positional vertigo in each ear. i went to a rehab specialist who did a repositioning technique on me (epley) and almost immediately the migraines started. i became very dizzy, vertigo, i was unable to walk, read, watch tv, do anything for myself without assistance. i also had some sort of abdominal migraine which sent me to emergency room 5 times. i spent at least 8 months in bed while my neurologist fiddled around with different medications, endep, nortrip, sandomigran and a trip to hospital as well. none of these things worked and i continued to experience a bundle of side effects including hallucinations and severe constipation and misery. in the end my body was just withering away because i couldnt exercise my muscles or keep food down due to the motion sickness.

i thought i was going to die because my world was like this 24/7 and who would want to live like that! you just can’t. eventually two things happened, 1. a man who was a physiotherapist specialising in this sort of thing and pain management came to my house twice a week to help me just stand up and slowly do small tasks and 2. a psychiatrist helped me deal with what was happening to me and also put me on lexapro. i started to feel better on lexapro and i think its because when you stop kicking and screaming you can actually begin to cope better. i learnt a big lesson from that.

eventually my neuro tried me on Epilim and wow i could actually use my computer, read a book and watch tv again. the sensory deprivation had ceased!!! i cried for hours in pure joy.

im not back to normal but my state of mind has changed and im in a better place emotionally than i was prior to having this illness. i appreciate every day and marvel at the sun shining.

i got to a point where i could walk with a cane and then in march 2011 i got off the cane and walked by myself, down the aisle to marry the love of my life :). we are now hoping to start a family. i dont expect it to be easy but i have a great support network of doctors and thats really important. i think i am about 70% of the way there and thats a big leap from being at 2% which is where i came from. it has involved a LOT of hard work doing the rehab and pushing through uncomfortable scenarios with dizziness. next thing is driving!

what i really want to say is, if anyone is out there really suffering and someone is printing these stories out for you, there ARE solutions out there to this horrible condition and you CAN live a normal life again. just keep pushing and you will find the right medication and program to help get you back on track again.

Michelle
xxo

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