The Vestibular Migraine Community

Success Stories


#21

A year back I posted on this thread…then removed it. I jumped the gun. My MAV hit full force in late 2009 as intense sensitivity to light, sound and even simple thinking. Head zaps and ear tightness were common. As with most it took me a while to figure out what was up while doctors equally had no answers. I was blessed to come across Dr. Hain’s website, and since I live outside Chicago, I made a visit. He diagnosed me, then put me on 37.5 of Effexor. After a couple of weeks, I felt great again…which lead me to post on here. Soon after, the symptoms came back, and Hain upped my take to 75mg.

This took place in April of last year, and as of today, I’m doing well. I have to say the Fex saved my life, and I can live quite normally. I have to be careful about movement, and making sure I’m not hungry (along with MAV came hypoglycemia…???). As for food, I have come to figure out much about what works for me, and what doesn’t. I also have a script for Ativan just in case I get too dizzy, or will engage in sustained movements (cleaning the house, etc.). Also, I’ve gained about 20 lbs, but I’ll take it over my former condition.

Not sure how long Hain will continue me on the Fex, but as for me, it has worked great. Over time I have come to realize my life will not be the same as it was, but you simply adapt. It’s the “new normal” we come to accept, but hopefully, like me, you will find the right combination of meds and diet to make that normal livable.


#22

I’ve been a success story for a while now but thought I’d update as I am now an unmedicated success story.

The night before last I took my final 25mg of Prothiaden so am now not on any daily meds (occasional low dose Valium, only as needed). It took a very long time, almost six months, to come off as I was on 150mg and I’ve been on Prothiaden for a little over two years. With each 25mg drop I’d have a rocky couple of weeks and then things would settle again.

I am not 100%, but it’s probably not realistic to expect that - the migraine brain doesn’t just disappear. But, I’m about 90-95% most of the time, which is awesome. I have some triggers I can’t avoid (eg hormonal) but they are uncomfortable rather than unmanageable and there are triggers I CAN avoid, so wherever possible I do.

Life is now mostly normal and good :smiley:

Vic


#23

I hope I’m not jumping the gun by posting this under “Success Stories”…but I’m so excited to finally have relief that I had to tell the people who understand it the most.

For 2 years I’ve been suffering from vertigo. It came on suddenly with no warning or explanation. I thought I had a stroke or a brain tumor! I went to my primary care physician and so began the quest for a diagnosis. We started by ruling out cardiac issues and then moved on to a neuorologist, who suggested it was due to a problem with my neck (perhaps an old car accident). I did physical therapy and began seeing a chiropractor weekly. Then I became pregnant…which, to say the least, was the most miserable 9 months of my life. Dizzy, uncomfortable, exhausted…not a pretty sight. While I was pregnant I suspended all testing and just decided to “deal with it” until I could really put in the time and effort to get some answers.
In Febuary of this year I had finally had enough. I searched for a specialist in Boston (I life about 45 min from Boston) and found a balance disorder specialist at Mass Eye & Ear. During the consult, he listened to my symptoms and told me about MAV. I had never heard of it before, but it made so much sense! He scheduled me for a brain MRI and vestibular testing and advised me to start the elimination diet. The MRI was totally normal (as expected) and the vestibular testing was fine too. I started the diet…but I hung onto my 1 cup of coffee a day (as I had done when I was prenant too). My vertigo was no better…in fact I think it was worse! Finally after 2 weeks on the diet (+ 1 cup of coffee), I decided it was time to quit caffeine cold turkey. The first 4 days were terrible! Headaches and exhaustion we non-stop. I was truly detoxing…what a powerful drug!!! When the caffeine was completly out of my system it was like a fog was lifted and all of a sudden I felt like my old self again. It has now been about 3 weeks and I am 90% better! I am so excited to be able to spend quality time with my baby and not feel like I have to sit down or worry about losing my balance. Again, I hope I’m not being overly optimistic…but I’m enjoying every second of feeling MAV free:)


#24

Ok, I didn’t want to jinx it, but it has been several months now so I guess it is time to put a success story here.

In June 2011 I got really sick. I was on the cusp of first time fatherhood. I was super stressed at work. I also took a shot to my head while playing basketball–dunno if this contributed or not—I didn’t get a concussion or anything but it was a pretty hard shot that whipped my head back pretty good. Anyway, I first started seeing symptoms when trying to use computers–after 15-30 minutes of use I would start to feel really odd and unsteady and as I continued to use the computer I would develop this rocking vertigo as if I were on a boat. The longer I used the computer, the worse the symptoms would be, and I’d get additional symptoms such as anxiety and heart palpitations. This was a big problem since my job often requires me to be on a computer up to 12-16 hours in a day. I would also get tons of head numbness and pressure. I had one minor visual symptom—the world would seem to shimmer ever so slightly sometimes when things were bad.

I was lucky—my eye doctor referred me right to a migraine specialist who diagnosed me with migraine issues despite the lack of any painful headaches. Both of my parents had migraine issues at certain points in their lives though neither of them would be what you called plagued with migraines.

Over several months I realized that it wasn’t just computers making me sick–it was any artificial light. Fluorescent light was the worst, but any artificial bright light could make me sick in minutes, especially if it was right in my face. I started wearing sunglasses and migraine glasses in almost every indoor situation and that helped quite a bit, but working was still difficult and going out in public was always opening myself up to problems. I spent several months out of work as it was just impossible for me to spend more than about 15 minutes on a computer without being sick.

I started taking medication in September 2011 with Verapamil. It didn’t help and made me constipated. I switched to Nortriptyline in October. It made me happy but didn’t really help my symptoms much. I ramped up to 150mg over many months but never saw anything but very minor improvements that were probably just placebo.

In May of 2012 I switched to Topamax. Despite being told to not expect anything for 2 months, I saw results within 2 weeks. I was only on 50 mg, but 2 weeks in I was in a restaurant and realized that for the first time in a year the lights weren’t giving me the rocking vertigo that they always did. I continued to improve over the following weeks. By the end of a month I was no longer feeling any rocking vertigo though I was still having other migraine symptoms. By the end of two months I was feeling even better.
Here at the beginning of August I would say I am practically 100%. I essentially don’t think about my migraine issues anymore, though I do still keep my monitors set to low brightness levels.

The only problem the Topamax has given me is that I did pass a kidney stone last month. The doctors don’t know for sure this was from the Topamax, but it is very suspicious. I am hopeful this is a one time event, but there is a significant possibility I will have additional kidney stones. My neurologist is very hopeful that I will be able to get off of the Topamax within the next 6 months, so it becomes a game of just hoping I can make it for another several months before I have additional stones. He thinks there is an 80% chance I can come off of the Topamax and be ok without the medication.

I know my situation isn’t exactly like some people on this board as I was never sick 24/7 like some people, but I wanted people to know that I was sick for a year but I DID get essentially 100% better. It’s only been a few months here, but I’m pretty confident this will continue as long as I don’t have to stop the Topamax early.


#25

My chronic migraine headaches are almost completely controlled by wearing a mouth guard at night for TMJ, as well as lots of chiro to treat neck pain and doing lots of exercises. Acupressure seems to have helped too.


#26

Hello to everyone…I thought I write a success story to cheer everyone up since you rarely hear a lot of positivity about MAV, anywhere and I’d like to bring some light to us all and hopefully cheer you on to a happy recovery. (You will get better I’m living proof and trust me I’m the girl who invented Murphy’s Law lol X

It all started around two years ago, like most of you I just woke up with it one day. I woke up so dizzy i couldn’t walk or function. I couldn’t talk and my eyes were twitching back and forth. (Sort of like the exorcist). I felt something stabbing my neck, along with constant ringing in my ears blurry vision, and a numb face. Basically it I felt like i dove into a speeding truck on the highway and bashed out my own brains…….

I went to A+E got rushed into a CT scan, followed by a brain MRI, when they both came out clear with blood work a spinal tap was performed for testing. Doctors were baffled they could not figure out what was wrong with me as every test was clear. And just sent me home with some dizzy pills…

I was housebound for four months in bed, (if you have ever experienced this you know how challenging and soul destroying it can all be). Everything felt like I was a character from Alice in wonderland or something like a 50’s music video where a bunch of hippies are tripping on acid. I had constant vertigo, anxiety attacks and dizziness 24/7, photophobia, blurry vision, and a slow perception of the world (everything was in slow motion). I had no balance whatsoever and walked like I was drunk everything was just pure misery and hell) . I went to specialist after specialist, neuro doctors, ENT’s , balance specialists who didn’t have a clue of what I had. Frustrated as the months went on the only diagnosis I got was labyrinthitis . I knew very well this wasn’t the case as it’s a very rare and takes on average 6 weeks to recover from not 1 year. Finally I joined a support group on Facebook where I met the most amazing people possible, called the labyrinthitis support group, where individuals like me were going through the same thing. This helped me so much in my recovery because I knew I wasn’t alone and that I wasn’t going crazy.

Only Later on, around the 1.5 year mark I found out from my auntie I inherited this from my grandma who had it in the early 50:s” at exactly my age. (She never knew I was ill in the first place). ! She explained doctors then were as clueless as they are now in her matter and she got put on an experimental drug called purple hearts (which then got banned) , stories go that my grandma didn’t leave the house for two years and used to sit in a dark room day in day out, but it eventually went away within in two years.

After the year mark my doctor was upset I wasn’t better and sent me to a specialist in vertigo and neuro disorders. A top doctor I believe. A million more tests were done and everything again came out clear. The doctor who I will not name was as bad as they come and he tried to be smart, so what he did was diagnose me with a psychological disorder he made up. He concluded I was forcing myself to be ill and smugly called it, chronic subjective dizziness,. After a violent argument I walked away considering I might actually be crazy and have gone mad, maybe it was time to accept it all and give up. Funny enough I got a phone call a week later from one student doctor who was studying to be a neuro and was there on placement during my tests, she wanted to see me again ?. I remember her as a she stood by the professor looking really angry but I couldn’t figure out why ?she explained that she was not thrilled at my diagnosis and wanted to see me asap X I figured I been to around 15 specialist doctors why not ? I went and within 10 minutes of seeing her I got diagnoses of MAV. (Migraine associated vertigo), I got asked to try out a few meds and that was that…I was so happy.

The medication that worked the best for me was noritryptoline 10 mg with no side effects. I did go up in dose as far as 30 but found out that the smaller dose bettered my body’s recovery naturally. The meds I have tried include, stemitil, topomax, betablockers ,pitzotofen, amitryptoline and few more but I can’t remember the names noritryptoline is by far the best.

So im here today around the 2 year mark at 100 % but I won’t jinx it lol. A year ago I was at the 30% mark on a good day and would mostly hang around the 20% mark on a normal day! Don’t get me wrong on some days I still get moments where i feel off, or just weird , and slightly dizzy but nothing major and nothing like before. At worst it would be a 90%…, Im on a migrane diet and do not do vrt anymore but have done it for a year and half. XXX There is hope that you will get better and take my advice don’t listen to every quack on the street mainly doctors X…take things day by day keep positive keep busy and remember its not something that goes away magically, it is a chronic illness… .loved ones and people around you have to understand this and most importantly so do you, you can’t force yourself to be better, but when the time is right you will be!!! Much love to everyone out there I know what you are going through, big hugs and best wishes to a fast recovery very soon X XX


#27

Thanks for taking the time to write that story Lindsay. The thing that is most powerful in your story is that it encompasses two main fallacies that I have seen so many times over the years that lead migraineurs astray from getting to the bottom of this:

  1. It’s labyrinthitis or VN – uncompensated. As you rightly pointed out, it just does NOT go on for years as you’ll see on the internet in some forums. What really alarms me is that there is a labyrinthitis forum out there where they promote this message of it going on and on and on … just a little more VRT and it will fix it etc. Baseless and nonsense.

  2. Chronic subjective dizziness or psychogenic dizziness – another one that we hear so many times. Indeed a specialist in Sydney loves this diagnosis because he just does not understand that the MAV variant produces anxiety by its very nature. A no-brainer yet it persists.

Thanks again. I’ll be referring a lot of people to this story in the future.

Scott 8)


#28

This is probably premature to some extent, but a week of five straight days in a row is a success for me. It’s been nearly 9 years of chronic vertigo but never any really bad headaches. Definitely worsened at peaks in the menstrual cycle and I had two years vertigo free and drug free for no apparent reason… as I get older the triggers are getting clearer. Recently my GP has been considering the vestibular migraine dx. Previously it was a menieres dx. We tried amitriptyline 10 mg for two months but it was too sedating. Although I did feel probably a 50% improvement on some days, it wasn’t worth the sedation. We had previously tried topamax but only 14 days in I stopped due to side effects of anxiety and feeling strange and de personalised and these started pretty much in day one and there was no improvement in symptoms.

So I was re reading the posts here from Scott on the tips and answers from the top doctors. I decided to cut out caffeine in the hope that if it helped I could then use it medicinally … in much the same way as people who get headaches may need to cut out aspirin to stop rebound migraines. Now, I’ve done this before and its had no impact, on my vertigo, and I’ve also done the menieres diet for months, but, ive never cut out tea as well as coffee.

Interesting outcome… I spent three or four days cutting down from four caffeine drinks per day to none. Day one and two , no difference, day three, woke up with violent vertigo of the worse kind I’ve had in years. Lasted four hours. I took nothing . But it resolved to 90% clear which is very unusual after such a bad attack. And I’ve been 95%straight for the past five days now. It’s been two years since I’ve felt this straight and its not just the five days in a row its the quality of the straightness, the clarity of my vision, the ability to walk in a straight line etc.

Also restarted the topamax five days ago at 25 mg and I have no side effects at all. This is very surprising to me.

One of the docs used the swimming pool metaphor and that’s why I’m sharing this premature success story… Previously the water was lapping around my neck so stopping caffeine made no useful difference perhaps… maybe cutting out tea as well is what really tipped the balance. And I wonder also if the side effects are lessened because the water level is lower. But really, sometimes the pool is a bit of a mystery…
The message for me is to keep trying the same things even if they didn’t work in the past. Don’t despair. Have a break, don’t beat yourself up and try again. Something might be different…
Even though I’ve had this remarkable turn around in such a short time I am going to stick with topa if I can for a while because I like the idea that in the metaphor of the pool, it makes me taller :slight_smile:
I hope this is helpful info for someone.

Jan 2 update: three weeks straight now! Sticking with the diet, but couldn’t tolerate the topamax. Happy New year everyone.

Jan 27 update: I got to four weeks and have now had twelve days back on the wobbles…disappointing after four successful weeks.


Relapse without an obvious attack
#29

Hi all,

First I want to say how HAPPY I am to be posting in this section of the site! Words can’t explain what it means to be writing this!

I came down with my daily bouts of dizziness in May 2010. I’ve never had spinning vertigo, but my balance got so bad that I ended up in ER at U of Michigan Hospital in October 2010 and was diagnosed with MAV. I found this site around that time and have spent endless amounts of time over the past few years getting info from this site and other sources.

I have put together a program that has thus far proved to be extremely successful for me and I hope to stay this way. I chose to take the road less traveled and that is having success with this without taking prescribed meds. (I am not against meds, just wanted to find a way without them instead).

First I had to get the facts about my own self to try and pin point what was causing this. Was I eating foods that trigger this? Was I Stressing out too much? What is causing this? Getting to know myself and my body was the first thing to do. The first problem I know of was anxiety. Anxiety has been an issue for me and other members of my family for years. Well anxiety just happens to be a big trigger for migraine. At the time, I used like to binge drink once a week. Alcohol is another big trigger. Then there was the chance that I could be eating something in my diet that triggers it. After doing the elimination diet for a bit, I couldn’t find anything there. I put an unknown in that category. Stopping the alcohol didn’t seem to help a whole lot either. So I just would always go back to my normal ways and not get any better. In fact I was worsening over time so I’d trial some meds and they’d either fail or I’d just quit them.

Since anxiety is most likely a trigger for me, I put together an exercise program to counter the anxiety. It helped some, but I’d always end up quitting because it would also make me feel nasty. So again, I’d be back to square one.

Finally I went about this whole thing another way. My success is made up in 4 parts of 100%. And here is the best way I can explain it:

25%= I found a good multivitamin to get into my system because I was definitely lacking in some vitamins and minerals. I use a product called Intramax cause it’s real simple, but it is expensive. I recommend people find a good multi to start with.

25%= I put together an exercise program that includes weight training and cardiovascular exercise. Doing this about 2-4 days a week. Only about 1 hour per day. Don’t under do. Everyone’s always worried about overdoing it in the gym. I think you need to worry about under doing it in there because with MAV you already don’t have any energy to do anything. I had to fight hard during the bad bad dizzy days in the gym. I didn’t quit in there. You can’t quit! You can take a week off here and there, but you cannot quit.

25%= I finally gave in and stopped the binge drinking and got myself on a regular sleep schedule (get up and go to bed at the same time everyday even on the weekends). It was tough at first but I wouldn’t even think about it any other way these days. Food triggers would also be part of this category. But I don’t have any that I know of.

And last,

25%= TIme and Consistency!!! I can’t stress how important this part is. Doing all of the above over time has kicked this thing in the head for me. It didn’t happen over night, it took a very long time! Months! Not just a few, but many many months. I don’t know how many, but it was a lot. I’m still doing this. But I’ve been well for quite a while now.

It’s been a long road and I’m glad it has pretty much come to an end and has stopped dictating my life. I’m at 100% a lot of times and the worst I get is 90%. And we all know that 90% is a pretty nice feeling anyway. But 100% most of the time. I’m happy again and living life like I used to before this hit me. I’m back to my old self and I’m not looking back. I have accomplished what I thought was the impossible and I hope everyone here can get here too!!!

I do want to thank everyone here who has helped me through some tough times, there are too many to name here but you all know who you are so thank you all!!!

I hope my success story helps anyone in need! Anyone can feel free and message me if they want a more detailed description of everything I’ve done. You know I’d help you if I can.

Thanks Again everyone and GOD BLESS YOU ALL!!! You are all in my prayers!!!

Greg


#30

I too feel like I am very lucky. This is a new thing for me but it cleared up fast thanks to the right meds right off the bat and a sneaking suspicion from my doctor that it might be MAV. I didn’t believe him at first. I thought what the hell is he doing, he knows nothing and I was pissed that he would think all this crap I am going through is due to a migraine. So I started the Neurontin and about 4 week into it I feel almost 95% back to normal.

I was laid up for 2 1/2 months due to horrible dizziness, humming in my ear, fullness in my head, sinus issues, headaches. I thought i was going insaine and ended up at the mental ward due to a anxiety panic attack. I was admitted for 5 days. Anyway, this is my story and today i feel like a million bucks. i even have been going to the gym again. It’s awesome. i still have a very very low hum that comes and goes, and i feel some fullness in my ear that will come for like 1 min and then go away the rest of the day. i have not had a migraine headache now for 2 days. I am very happy to say i have no dizzienss right now. It’s weird and great!


#31

My first experience with this condition was when I got up one morning in 2009 and promptly fell to the floor. I was unable to stand upright because I had no balance. There was no warning prior to this. I had no motion sickness, no light sensitivity, no visual disturbances - only ringing in the ears that I felt was from years of sitting in emergency vehicles with sirens overhead. I did have migraine headaches when I was in my 20s and 30s but they had decreased significantly with menopause. After I fell to the floor, uncontrollable nausea began and I begged to die as I felt it would be the best release. My first emergency room visit followed, and the physician treated me with motion sickness medication and sent me home. Needless to say, that was ineffective and I was bedfast for a week and walked with a cane for two more weeks until this episode subsided.

When I was able to make it into a car and to my GPs office, he sent me to an ENT who diagnosed BPPV. I was given Valium and Ondansetron PRN, which was marginally effective in symptom treatment, but the valium left me so drowsy I was unable to drive or work, and was short term therapy. Over the next two years, episodes became more frequent and lasted longer, and my GP started looking askance at me when I would ask for a refill of the Valium, as if I was faking this condition to get the pills. He sent me to a neurologist who told me there was nothing wrong with me and that I needed to stop taking Valium.

I started doing my own web research and found information on MAV. When I took it to my GP, he was skeptical but prescribed Topamax 25 mg to see what happened. I am an insulin dependent diabetic and he said he suspected the vertigo was related to my glucose level. When I talked to him about the wind, sunlight, fluorescent lights, riding in cars, noise, and computer screens triggering symptoms, he really looked at me as if I were a hypochondriac, and I was starting to feel like one.

I began taking the Topamax 25 mg in January 2013 and the first month was really tough with the side effects. Carbonated drinks taste metallic so I have given them up. I had tingling in my extremities but it has subsided for the most part and is seldom noticeable now. I am not able to multi-task as well as I did, and I feel foggy at times, but I went from being almost non-functional to working and driving and resuming most of my normal activities. I still cannot do EMS work because I cannot ride backward in a moving ambulance yet, but thankfully that was my volunteer work and not my JOB. Red wine, chocolate, and fatigue are my biggest triggers now, even with medication, so I avoid them. Life is good again!

To everyone who is frustrated with the medical system, I understand. It seems there is no information in most areas about this condition. I have been passing it on to friends and have several in my small circle who have been or are becoming symptomatic. I have educated my daughter about the triggers and the treatment because she is showing early signs of migraines and allergies. The medical community in general does not understand how debilitating this condition is and how their lack of knowledge stigmatizes those of us seeking treatment. I know I would feel guilty when I had my prescription for Valium refilled at the pharmacy, because it had to be called for physician approval each time.

Keep searching and don’t give up. You are your best advocate. If your doctor does not have this information, offer to educate them. If they don’t want to be educated, find another doctor. There is hope out there!


#32

I am on 25 mg Topamax but scheduled for an appointment soon to increase to 50 mg as some breakthrough episodes have occurred over the past 2 months. I was on this dose for about 3 weeks before I saw small improvements, and then saw most symptoms go away gradually over the next 2 weeks. I have taken it a total of 3 months now at 25 mg, and the improvement spurred me to keep going through the side effects. I no longer have to wear sunglasses in buildings because of fluorescent light sensitivity. I can be in moving vehicles without dosing heavily on dramanine before leaving. I still cannot ride in the back seat though. I have occasional BPPV so it is still there but that is when I change head positions as in lying down or getting up, mostly when it is allergy/hayfever season. The Topamax has greatly improved my balance. I still hold rails when going up and down stairs but think that is habit now from all the falls I have taken over time. I don’t have the room shifting on me or feel as if I am rocking when I look around me. On the Topamax, I still have to watch my trigger foods, especially chocolate and red wine, and stress is still able to upset the boat so I work on relaxation techniques. Overall, life is so much better on Topamax because I have not missed any work since it began acting on my symptoms. When the dose increases to 50 mg at the next physician visit, I am hoping to even out the breakthroughs I have for a few minutes a couple of times a month. That sounds so good, compared to the constant problems before Topamax when it was all month, all the time.

I have passed on this forum to friends with similar symptoms who have not been diagnosed in the hopes their physicians will learn from it. I will never forget the neurologist telling me that I needed to do the head exercises for BPPV over and over and over until the dizziness went away and to throw away the Valium. There is no way those head exercises were helping VM and Valium was the only lifeline I had at the time keeping me upright and able to halfway function. Also, the ENT telling me that I needed to lose more than a few pounds to help my issues as my MV was directly related to my insulin control. My insulin levels are under control and were when the VM was active. He is the one that threw out the term “VM” at my last visit, as an aside, saying maybe I should look at that since I wasn’t going to listen to him anyway. That started my independent research process that I took to my GP. He had never heard of it but was very receptive to learning. And this is 2013 and these were young physicians! My goal now is to educate anyone I can about this condition because there is no reason to continue the suffering.


#33

Yeah, I need the meds that are controlled substances, and I’m in a profession that would frown on them if they knew. I agree the vast majority of doctors have no idea what the heck this is; hopefully things will change?? I don’t lie about the drugs, but I don’t have to because the meds make me feel so great that I don’t have to talk about the migraine stuff. I just say I was really sick and disabled in 2009 but now it’s not an issue - distant past. Success!


#34

I take 10 mg/day of Librium (benzo with a long half-life - longer than Valium). 10 mg/day would probably knock a horse out, but I seem to tolerate these drugs well, and when a NASTY summer hit a few years ago, 5 mg/day wasn’t cutting it. I also take 75 mg/day amitriptyline, 75 mg/day Effexor, and 75 mg each morning of buproprion (Wellbutrin). The Wellbutrin is a small dose that my neurologist said will give me a little kick in the morning. I wasn’t complaining that I was sleepy and didn’t really notice a difference, but I’m afraid to change anything at this point. I have to take another drug test for work soon, so I’ll bring a prescription or letter from my doctor and the pill bottle b/c the benzodiazepine with be detected (I’m paranoid that new employers will find out and not like it. I’ve been feeling so good for so long that I don’t make a big deal of it when I interview.)
After learning more about migraine/MAV when I got so sick, my mom realized she has it also and started 10-25/day amitriptyline. (Her sister had already been doing the same thing, and she didn’t know!) Lately, her MAV threshold has been low, so she’s going to try adding the Librium. Her primary care doctor didn’t want to give her enough to take everyday, so she’s going to see my neurologist.


#35

Hi All,
Well after 14 months of this crap - I have been seeing the light at the end of the tunnel! thanks to my neurologists, Topamax, Lexapro, Diet mods, massage, etc and now I have the OK to drive. So far I have been on the road three times, (well around the block) first time I wanted to vomit after, it was just the build up of it all, took me all morning to get into the car! Taking everyday as it comes seems to be the key, if its a good day I just go with it - my good days now far out number the bad ones, even then the bad ones are no way like they used to be, they are manageable. In my darkest days (and there were many) I thought I would never get to this point. I remember my neurologist saying to me, “there are two of the most hardest hurdles we have, diagnosis and treatment”. He said I was lucky that I had the diagnosis early but the treatment may take time. I’m not saying I’m cured, I know I’m not, I still have head pressure, nausea, now and again. Every morning I wake up hoping that it will be a “good” day. But if I can hold onto some kind of normality, and have clarity for my children then I can’t ask for anything more.


#36

Hi all, I haven’t been on for a while and as I’m posting in this thread you can all tell why! I have been feeling really well for about 2-4 months now. I can do all normal things. My “bad” days are like what my good days used to be like Andy good days are feeling normal, intact feeling on top of the world. People always ask what got me better but in my life it was a mix of things. Personal and medical. It wasn’t easy and I never thought it would happen but I am living and feeling normal again! Working, socialising, etc. will stay in the meds gabapentin and pizotifen for quite a while to come. It did take a good 6 months on these drugs to see any positive effects!! Xx


#37

I have been suffering with chronic migraine since March of this year. I suffered with 24/7 dizziness for 4 months and although I still have daily mild migraine headaches sometimes esculating to more moderate headaches I have got rid of the chronic dizziness part of my migraines.

Originally I struggled to stand up for long periods of time due to the severity of my headaches and continual dizziness. I started to read more about my condition and found that caffeine can often keep people in a chronic state of migraine. Therefore, I was very strict and cut all caffeine out of my diet as well as cheese also a trigger for some people and didn’t take any pain killers or tablets of any kind apart from migraine prophylaxis. I noticed a considerable difference and improvement in my condition after a few weeks of doing this although still had some dizziness. I was also started on propranolol and after about 3 weeks of taking this been on it for about 2 months now I noticed that all my dizziness had gone. I also found that the more I forced my self to get up and walk about and go out and do things the more my condition improved although this was very hard particularly at first and only managed it with the help of others (Sometimes I got very upset when I was out due to feeling so unwell). I also tried doing some VRT which I found out how to do from you tube. I went from not being able to read a book or watch a film to almost back to my normal functioning self. I was off work for almost 3 months and I could not drive. Now I’m back at work and can drive and do all the things I used to love doing like swimming, running and yoga. I still suffer with daily migraine (head/sinus pressure, amongst some of the other migraine symptoms) but I am confident I will eventually get rid of this if I keep trying the meds.

I am currently on 160mg SR capsules. I oringally started on 80mg SR for two weeks then went up to 160mg. It took about three weeks from starting the propranolol for my dizziness to go. I still suffer with daily head pressure mainly in the back of my head with other migraine symptoms. I have been on propranolol for about 2 months.


#38

If Scott wants to move this to success stories feel free :slight_smile:

I have been a dizzy for four years but now I have found pitzotifen combined with amitriptyline I feel soooo much better!
I would say I’m 95% now sometimes less on bad days hormones/illness etc. I hope this gives hope to anyone suffering that things can and do get better.

Thanks for everything but I’m going to bow out of the boards now and get on with life.

Lots of love Donna


#39

Hi, I am writing this to give hope to others that are ill with MAV. I used to post occasionally on here but I became so overwhelmed with having MAV that I became depressed and withdrew from others. I felt so ill and hopeless that I honestly felt like there was no chance at a normal life.

I suddenly developed MAV in May 2010 and it was debilitating and nonstop. Daily (all day) I suffered with: severe dizziness (so severe that often I could only walk a few feet then rest) made worse by patterns, crowds, shiny floors, and fluorescent lights; when standing I felt like I was dropping into the ground; the ground constantly felt like it was bouncing; I rocked back and forth. I also had numerous other symptoms. I had a job in research so I could not take time off work. My symptoms were being managed by a GP until I could see a neurologist – I live in Canada and the wait list is long for a specialist.

After failed drug trials (Nori and Ami and three attempts at Topamax) my GP finally put me on Depakote and I immediately felt an improvement. I reached 750mg and while my functioning was better I never felt completely normal. I also gained a huge amount of weight. When I finally got to see a neurologist we discussed the treatment options and given that I responded well to an anticonvulsant (Depakote) we decided to try Topamax again.
My neurologist works at a large migraine research centre here in Canada. He explained to me that Topamax is a very difficult drug for many people to initially take, and to expect to feel ill at first. If a person’s primary symptom is dizziness, this can be exacerbated for some time. Further, he said that Topamax works very slowly, and the positive benefits may not be seen for as long as three months or more. With each titration upwards, the side effects can appear again, but they may lessen. My neurologist said that many patients abandon Topamax long before any benefits are seen.

I have been on Topamax for nearly 2 years. The titration to 100 mg was very challenging but I took my time (6 months). Having a supportive neurologist made all the difference. I was very dizzy getting to 75mg but after that things seemed to calm down. I eventually had to titrate to 200 mg to get full relief of MAV.

Currently I am still on 200 mg of Topamax. I really don’t think much about MAV anymore. I am living the life that I used to live prior to May 2010 when I got MAV. I still get the occasional migraine (but with no dizziness) that is weather related but all the other MAV symptoms are gone. For all of you with MAV please remember that you **will **get better


#40

Hi Everyone

I have not been to this site for a long time and I’ve been meaning to stop by to post a message to share how I believe I got better. I posted here about 3.5 years ago when I became dizzy all the time with what I believe was mav. It was not a spinning as such, just a weird feeling of motion all the time. Even walking down the street felt weird. I noticed I could not focus on a distant object and hold it steady in my vision as I walked ( I know there is a name for that aspect of physiology and it works the same way as a tank gun can keep level even when climbing or descending). Anyway to cut a long story short I felt pretty sh1t.

After months and months of trawling the internet every night I read some articles about something called Kefir. I’m not going to go into detail about Kefir because you can google it yourself. I decided to go for water kefir because the dairy kefir tasted pretty horrid to me and also brought me out in acne. As for the water kefir I actually find it a very pleasant drink. Before you think to yourself ‘oh is this someone plugging a product’ - the answer is no. Kefir are just grains that you feed sugar water and they digest it and it produces pro biotic bacteria in very large amounts. I started drinking it 2 years ago every morning on an empty stomach as soon as I got up. I’ve read some people find it very hard to tolerate and have to start off with tiny amounts. I drink 1\2 litre per day. How much does it cost to make? A bag of sugar a month, that’s it! The transformation for me has been remarkable. At the time I lost my pilot’s license which was pretty awful for me but now I have that back and feel great. My personal belief (and I’m not a doctor or scientist) is that a lot of ill health actually starts in the gut. Kefir supposedly helps re-balance the bacterial landscape in the large intestine. Nowadays I also have drastically reduced my sugar intake because I believe sugar feeds the bad bacteria but I do have treats now and again. The Kefir effect took many months to take hold but I stuck with it because it is a nice tasting drink and it costs almost nothing to make. I got my grains off ebay for about the equivalent of 6 US dollars. If you take care of them they will live indefinitely. You feed them sugary water and they feed you lots of enymes and beneficial probiotic bacteria.

So why not google kefir and see if it is something you’d like to try. I can also report that a lot of my food sensitivities have disappeared. For example I could hardly tolerate bread at all whereas now I can eat it with no problems day after day although I do try to limit bread as I believe wheat is best in moderation.

I hope you find a tiny nugget of useful info in this message. I’ve gone from hardly being able to walk down the street to studying for a commercial pilot’s license.

Good luck to you all

M