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#261

Hello Sues
Welcome to the forum where we all understand and emphasize what you are going through - we’re on the same wavelength as you and have all felt that sense of wonder that other people on the globe actually ‘know’ what we’re living through!
First, Dr S has quite a few grateful fans on this forum for the wonderful help he gives (has even been called an ‘earth angel’ so you’re in good hands! Getting a diagnosis for our weird symptoms is a great step forward - gives hope for living a ‘normal’ life.
The hard part is, we all seem to react differently to meds so what works for one mighn’t work for another MAVer. However the good news is that once we have the diagnosis there are loads of different drugs to try and lots of support here, so never give up hope of getting your life back.
We all thank our lucky stars that Scott & Adam set this forum up and we eventually found it, with so much info about MAV and the great support from the other members.
Regards
Barb


#262

Thank Barb

This site has been a godsend! I feel a bit torn as I feel awful that so many people have this really horrible illness but at the same time I’m so relieved that there are people that understand it. It can be so lonely and so hard to try and explain to people. Now I can stop torturing myself on Facebook and get some positive advice and even give some if things improve.

Thanks so much x


#263

Hi Sues,

I’m new to all this and you’re right, It is so nice to have a forum where everyone understands what you are going through. I was first diagnosed with Meniere’s and was told there was no cure and just to treat the symptoms. GREAT! Then when I still felt like I was on a boat and in out of space for months I decided to go to Mass Eye & Ear. The Dr there said doesn’t sound like Meniere’s but does sound like MAV. He told me to go on this forum to see if I had the same symptoms as everyone else… Yep… same symtoms for sure. I don’t get it. One day your healthy, going to the gym, feeling great and BOOM! MAV hits you and you can’t function, can’t finish your sentences, feel like your always drunk, but look just fine. Nobody understands what I’m going through except for those on this forum. I am so greatful for everyone here. I just started on Nortriptyline. the first week was great. I just increased to 20mg and I feel like I’m walking a bit sideways, dizzy…and just don’t feel right. I may have to go back to 10mg. Was wondering if anyone else had good results on just 10mg of Nort? I just want to feel normal again. I would give anything for that. I hope that one day soon the Dr’s come up with a cure :?


#264

sovertigo, you have been through so much bad crap that I would say this is worth as much of a shot as anything. You seem to feel better with medications that might be reducing migraines, and there is DEFINITELY a link between migraines and vertigo. I say have your doctor aggressively treat you for migraines and see if you don’t feel better. After 10 years of living with this crap, what do you have to lose?

If the flunarizine doesn’t work out or gives you bad side effects, DON’T GIVE UP. There are a ton of other anti-migraine meds to try. I’d give at least a few of them a shot if you seem to be getting ANY kind of relief from them. The fact that you get more symptoms around your period and when you don’t get enough sleep are very classic migraine symptoms.


#265

If flunarizine has a dangerous side effect like that, then maybe it isn’t the right choice. There are several other first line migraine preventative medications that, while they have their own potential side-effects, certainly aren’t that dangerous. I would certainly be nervous about using any medication linked to tardive dyskinesia. Sorry, I was not familiary with flunarizine because it is not available in the United States.

Thank you for asking–I am doing very well. I first trialed verapamil with no success. It did nothing for me and gave me massive constipation. Then I moved on to nortriptyline. The nortriptyline stabalized my mood (I had been devastated because without the ability to use a computer, my entire career was essentially dead) but did very little to help me otherwise. I tried it for a about 9 months because, due to identification of my triggers and heavy use of migraine glasses (essentially sunglasses) I was able to bring things a little bit under control. So I didn’t want to stop. But eventually it was clear that no matter how much more I took (I got up to 150mg) I wasn’t really getting any better.

I eventually decided that wearing sunglasses all the time wasn’t the answer so my doc decided to have me try topamax (topiramate). Within 2 weeks I could tell it was making a difference and within a month I had made huge strides. Now, 2 months into the topamax, I would say I’m 95% better. I’m still waiting a bit for the other shoe to drop, but I am experiencing almost no side effects. I get slight tingling in my hands from time to time, and carbonated beverages taste terrible. That is about it. Topamax can have some really serious side effects with your eyes but I don’t seem to have had those. If you are aware of them and tell your doctor the minute anything goes wonky with your vision you should be able to stop the topamax before any damage is done. Supposedly they are some cognitive issues associated with topamax as well, but I think at this low of a dosage (100mg) the effect is low enough that I don’t really notice it.

Maybe the answer for you is to talk to your doc about trialing some migraine preventatives other than the flunarizine? You might be able to find one that helps you out but doesn’t raise the spectre of an even worse condition like tardive dyskinesia. It is slow and frustraing work trialing a bunch of mediations to find one that works, but it could be well worth the effort.


#266

Hello. I’m not even sure I really have MAV, however that is my diagnosis. Maybe my story is similar to most of you, I’d love feedback.

I’ll start with, when I was a little baby my mother spun me around in her arms and it scared her to find me stiff as a board and pale. That is the story she told me all the time because I was always motion sickness throughout my childhood on trips. She felt like that was an odd thing, and she was right.

Around age 8, my family took a vacation to Europe and I had to take 4 plane rides. One from FL to NY, and NY to Rome, and then countless busses, boats, and car rides. On those planes, I complained of feeling extreme sensitive to motion, and ear pain naturally.

It wasn’t until I returned home that next week that something odd happened. I was sleeping and woke up only to notice the room spinning. I experienced vertigo for the first time and I had to run and look outside the window to see the earth not moving. I have not been right since, the vertigo is 24/7 and constant. It almost always turns to the left, and I freaked out as a kid. My parents had every test you can think of have done to me, and I was considered normal as usual. I didn’t even have a diagnosis at the time, except they linked it to allergies.

In my teens, especially late teens and early 20’s, it appeared to me it went away. With the exception of anxiety, I had a great young adult life. I took klonopin for the anxiety, and I only say that because I wonder if that drug is linked to my current problems. Unless I thought about the vertigo I had and literally stared at the wall, the spinning was so mild, but not fully gone. I felt like it was a minor nuisance but absolutely very livable. The worst part was when I went out late at night and drank alcohol or partied that I suffered being dizzy throughout the night. However, I still was extremely sensitive to motion. I never went on any carnival rides or took a boat out.

When I turned 27 I married and a year later my wife gave birth to our son. Ironically the next day I had a huge bout of dizziness which I just related to being tired. Soon after, I was full blown spinning and had massive headaches. I tried to rest and sleep all I could but my wife was all alone and I was so excited about our newborn.

I went to the emergency room a few days later and had an MRI, a CT scan, blood work, countless medications. I went to a neuro, and had a full evaluation, and every test and drug he could dream up. I had the MRI with the dye, I was even sent to John Hopkins. All negative.

At John Hopkins, after other testing, that is where the doctor confirmed what he believed was MAV and possibly a case of Mal de Debarquement mixed in. I was prescribed Klonopin among other drugs but the Klonopin is what I’ve been taking since I was 23. I am now 32.

I first had bad weeks, and then it appeared to get much better, but now it’s always bad, and sometimes scary bad. I am absolutely always dizzy with headaches that come and go. Lots of face pressure. I am 24/7 spinning and off balance. I feel like the movie wizard of Oz, the part when the room is stuck in a tornado, that’s the best way to describe it. Nothing in my world looks normal, almost every line is crooked. Every wall is caving in, and even though I’ve never tried acid, I imagine this is what it’s like.
Some other details: I don’t diet, I drink too much coffee, and I still drink occasionally and suffer through it. I am stubborn but trust me I pay the price. I read the migraine diet books, and I avoid most of the big triggers except the coffee. I take klonopin daily, and I work even when I’m dizzy. I’m extremely stressed, I own my own business. I can’t wake up in the middle of the night, I am so fatigue and if I don’t sleep much it shows in my blood shot eyes.

One last thing, If I take long road trips, like more than 2 hours, my ears feel like rocks and I am so dizzy I can barely stand up. It take a while for me to get back to just being “regularly dizzy” if that makes sense.

Thanks for listening,

Tony


#267

Hi,

I have always suffered from dizziness throughout my life and was diagnos with meniers. I have alway had hearing loss in my left ear and ringing too. I did have 3 surgeries in 2009 for an oval fistula in my left ear when I woke up one day with vertgo which helped with some of my dizziness but it has left me with with this rocking/floating sensation. Since then I have been trying different medications and none has really helped. About a month in ago my doctor gave me Topamax to try and the first thing that I noticed is that the floor benith me does not streched out, I call it feeling my height. I have also nocited that I can feel some relieve from my rocking/floating sensation in waves through out the day. I am taking Topamax twice a day 25 mg each time. I wanted to know for the folks that take it if that is how u felt when u first started taking Topamax.

Thank u for reading my post and responding.
Sorry if I am short with my post, being on the computer is a really struggle for me.
Ada


#268

Sues,

So much in your story really resonated with me.

I’m only 2 months out of a job I loved, but it is a really tough pill to swallow!

— Begin quote from “Sues”

It I have been to a few weddings but this involves complete bed rest for a week or so prior, depending on how bad things are, and then days, weeks, after the event to recover. So it’s not my friends fault. They see the laughing joking girl on that day and not the planning and the aftermath. I guess I should be grateful I get to have that day, some MAVers don’t even get that.

— End quote

I have had a hard time explaining this to people, and even to myself. When I know I have an event I want to attend, I really lay low for days beforehand, avoiding all potential triggers (basically, laying around doing nothing, and making sure to do light exercise, and eat nothing interesting). Then after the event I usually feel like I’m on a boat for a few weeks until the effect of the all the music and lights dies down.

I hope topamax helps you. It has been the only drug, so far, that has helped me. I’ve been actively trying out various drugs for going on 6 years now.

Also interesting that you had tachycardia problems, I’m going off protryptilene for tachycardia problems, which my doctor made me feel like were extremely unusual.

This forum is a godsend for me, and keeps reminding me I’m not alone.

Keep trudging the road of happy destiny.


#269

I am so glad I found this site. Like others, I had begun to think I was crazy. I have been fighting “the dizzies” on and off for seven years, but the attacks are getting more frequent.
I am 58 years old, and have no history of migraines. I rarely even get headaches, as I traditionally thought of them. October of 2007 I got up to go to the bathroom and everything was spinning. I went back to sleep, but the next day it was still there. Then, the actual vertigo subsided into intense pressure from the back of my head to my temples. I went to my GP after two weeks - had a normal MRI, so I figured it would go away. It did- 6 weeks later. During this time, I had a hard time working, and when I needed to really concentrate it got worse.
I had no attacks until about ten months later. This time, my GP sent me to an ENT, who diagnosed me with BPPV. He presribed me some Ativan, and they did the Epley maneuver, which worked. Until about 6 months later. I went back and had the Epley maneuver again, but it didn’t help. They told me it was because I wasn’t keeping my head still for 48 hours after. So they did it again, and I went home and went to bed, but was still sick for another three weeks.
Since then, I’ve had the attacks three or 4 times a year. Starts with intense vertigo. I’ve found that if I go to bed immediately, I am ok when I wake up. Unfortunately, this often hits when I can’t lie down right away. After an hour or two, I am in intense brain fog, extreme pressure like it’s coming from inside and outside my head). If I turn my head slightly, the vertigo comes back. Cannot go in stores, even riding in a car is difficult. Any little bump makes the vertigo come back. Some days are worse than others, and I try to work, but it seems I have to pay the price. I have now been in bed for two days.
I have an appointment for vestibular testing and to see ENT in August. I thought from my symptoms that I have Meneire’s - but after reading this forum I think it is probably VAM. I am getting very concerned about not being able to work, and hopefully I will find a doctor who can help.
I have not been able to identify any triggers - this just comes right out of the blue.)
Thanks to all for reading this.


#270

— Begin quote from “sovertigo”

Dear lolly
Yep… Sounds like my vertigo started. It’s been 10 years now and I never had a vertigo crisis that was as bad and lasted as long as my first. So keep faith :slight_smile: Part of my vertigo comes from the inner ear but the major part is from migraines in my case.

have you tried taking ibuprofen when you have vertigo? It’s the only thing that helps me and makes be able to leave my bed when i have ab attack i know it doesn’t work for many people but for me it does. So it could be worth trying! Just be careful not to take too many and continue seeing specialists you should see.

— End quote

so-vee: I am not supposed to take ibuprofen as I have gastritis, but I will try it. A tummy ache is a small price to pay to help loosen this vice on my head. (I went to my GP today - he doubts I have migraines- but did get me into a neurologist. And gave me a xanax prescription. I have an appointment next week with the neuro. We will see.)


#271

Hi or G’day to all on this forum,

I have just joined and feel as if a weight has been lifted. Reading all your stories has given me a sense that I’m not alone, that I’m not insane. Thank you all for being so honest and open. Sometimes its so hard to show your vunerabilities and it is refreshing to do that with people who are going through similar issues.
I am in my 30’s a Librarian and have two daughters. I live in the beautiful Blue Mountains outside of Sydney.
My health crisis began about 4 years ago, my relationship ended and my stress levels were extremely high.
I have only recently received a diagnosis of MAV. Before this I have been told a myriad of things from ear issues to anxiety. (I know you all know!)
I have been rockin’ and rollin’, falling to my left, problems with my eyes tracking. Sometimes I get a weird brain freeze/blip I’m unsure how to describe this, but I feel like it just stops for a nano second.
I do suffer the more common headache with aura, but I didn’t know that imbalance, dizziness and vertigo could be a symptom as well, obviously it also wasnt in many of the several Dr’s knowledge either.
I believe that it is hormonally driven as symptoms are so pronounced through my monthly cycle.
I have a couple more tests that this new Neuro wants to do, but he believes it presents like MAV. I have had a million tests and all came back clear. This Neuro wants to do a new MRI, as the Librarian that I am, chucked out my 3 year old MRI. (my new Neuro was horrified) I was told its anxiety so I thought get rid of this!!!
A this stage they have started me on Inderal, but it hasn’t seemed to work in the past 5 weeks so we will see.
I hope that I am able to get it sorted. I have days that are such a challenge and feel sometimes frightened because I dont know how I’ll cope. At other times, I watch my daughters playing and laughing, my partner whisper sweetness in my ear and I have a renewed sense of hope.


#272

Hi guys, I’m Anna 31, mother of two toddlers (!) aged 1 1/2 & 2 1/2.
Here’s my dizzy journey so far. Last July I contracted hideous gastroenteritis, i noticed that I was slightly dizzy. I didn’t think much of it until as days & weeks went by & I noticed I was getting more & more spinny. I had up to 50 ‘catch ups’ per day. A month went by - thought I better see my GP. He performed the epley manoeuvre on me & told me this will go in a month- its called BPPV. 2 months went by I was no better back to the GP who told me give it another month , this will get better. Another visit to the GP who told me to give it time - I started to google. The only diagnosis I had was BPPV I found the wonderful Physio Nicky Harris who I saw a few times. She gave me some VR exercises which unfortunately didn’t work. She diagnosed me with either MAV or VN (we are now at Christmas 2011). Christmas was horrid I was extremely spinny & sad that this horrible illness had ruined my babies first Christmas :(. Many thanks for reading
Anna x


#273

My dizzy daughter (Katherine) has an identical twin sister with no problems.

From another discussion:

January 9, 2007
Hello everyone. My daughter is now 13 years old. She has suffered terrible dizzy-like “waves” that cause her to vomit and she is unable to get out of bed for days at a time. The attacks come every eleven or so weeks and they last about eight days. My daughter says that she lives life with “regular dizziness” but the “waves” are what debilitate her. She has undergone CT, MRI, PET Scans, EEG, EKG, Carotid Artery Study, Allergy Testing (she is allergic) and nothing has provided a diagnosis. Meneirs has been ruled out and the new diagnosis is “atypical migraine.” Does anyone else have a similar affliction that can help to point us in the right direction? I do not believe it is migraine because no migraine remedies have ever helped.

July 4, 2009
It has been nearly three years since my first post about my daughter who suffers from cyclical dizziness. We have now learned that the attacks happen every 80 - 85 days. It is that predictable! Still going on as scheduled. She is 16 years old.

July 6, 2009
My daughter is now 16 years old. Nothing has changed except that her doctor put her on birth control pills, thinking this could be related to hormones. No change. She still gets her dizziness. We have calculated that her attacks come every 80 - 85 days. We can literally calendar her next attack. She gets dizzy warnings a few days before onset. Day three is always the worst day. By day five or six, she is able to walk around. Then, it just gets more bearable from there.

February 11, 2011
My daughter is 17-years old and she still suffers from her cyclical dizziness. I have looked into other posts about Cyclical Vomiting Syndrome. Those who suffer from CVS do not get dizziness (except maybe as a result of vomiting and dehydration) but they are on a definite cycle. Parents post that they can calendar the anticipated CVS episode. It seems those episodes last about three days. My daughter has never had an episode last less than one week. We just deal with it. Specialists dub it a “migraine variant,” yet no migraine medication has worked. She does take Zofran for the nausea and that has been a life saver! Other than that, nothing new, no cure, no nothing. My poor baby. What is she going to do when she gets a job? Tell her new employer she has to take off an entire week every quarter?

February 10, 2012
My daughter is now 18-years old. She still suffers from the dizzy spells that I have described in all the other posts. It is very predictable - every 85 days. When she was a baby, we did not know she was dizzy. We just thought she was sensitive to her baby formula. When she got a little older, doctors told us it was psychosomatic. We went to every specialist imaginable. We went to the House Ear Clinic to see if there was something going on in her inner ear. They ended up treating her for allergies for a year (allergies can trigger migraines and the M.D. thought this might be an atypical migraine variant). We did not figure out that this was cyclical until one day I went through my calendar and just started counting days between dizzy episodes (I have been calendaring her episodes for the last ten years).

My daughter is an identical twin. Her twin sister has no dizziness at all.

My daughter has a job now and she is in college. Luckily, she started her new job immediately after she finished a dizzy episode. This gave her a couple of months to prove herself so that by the time her next dizziness episode came, her manager trusted her and understood she had to take a week off. She works at a restaurant and has moved up from hostess to server. College for her has been easier than high school because when she has her episode, she does not have to miss as many classes (college classes are stacked in two days rather than five days per week).
We were just looking at an opportunity for her and her sister to go to London for a study abroad program. It was perfect and we were all so excited. But, I just now counted the days and she is due to be dizzy around the time of departure. We have booked and canceled so many trips and events in the past (before we realized she was on a schedule). We need to wait to see when her April dizziness attack comes so that we can figure out when her July attack will happen. She is due to be dizzy April 11 but I am crossing my fingers for a bit earlier so she can go on her trip July 7. The dizziness lasts about seven to ten days. We count from the first day of her last dizziness cycle (just like you would a menstrual cycle).

I am rambling. Sorry but just wanted to update you. I still do not know what this is but it has lasted eighteen year and nothing has helped. Please let me know if you have any ideas.

February 14, 2012
We’ve tried it before but we are going to try birth control pills again to see if that somehow will help. My daughter is due to be dizzy in April. We may try Depakote (250 mg every day for about two weeks before the attack until the attack is over). I was looking over my notes and, although the Depakote has never aborted an attack, I think it might take the edge off a little. I will keep you posted.

July 26, 2012
My daughter and her twin sister went to London for a study abroad program. We knew my daughter’s dizziness was due but she insisted she could stay in her flat and get through it with the help of her sister. Well, she called me on Day 1 of her dizziness attack and she was crying. She was having tremendous anxiety and she felt scared to deal with her attack in London. Her sister could not stay with her 24/7 in the flat so I flew out to London, got a hotel room, and picked her up from the flat. She and I stayed in the hotel for a week. By the time I left, she still felt crummy but was able to walk slowly. As the days went by, she was able to get around. She got back to normal and was able to enjoy her last two weeks in London. Her next attack is due the end of September.

August 10, 2012
My daughter says she has a baseline dizziness that she lives with all the time. It is her “normal.” She didn’t tell me that until she was around sixteen years old. Her attacks started at birth (looking back, she had regular vomiting episodes but we had no way to know she was dizzy until we saw her holding a wall while walking at about five. Her dizziness episodes are completely predictable; every 85-90 days. She just finished an episode so the next one will be the end of September. My daughter can also tell when her dizziness is coming. She definitely feels it for a good few days. We call it her dizzy warnings.

August 10, 2012
My daughter’s dizziness lasts longer than it used to. It is definitely a solid 10-day ordeal before it starts to get a little better. It seems the Depakote made the “waves” a little better but I think it makes the episodes last longer. She is still taking BCP. I am thinking we should not take the Depakote this next time and see if the attack is shorter.


#274

I was a young girl who did suffer motion sickness and headaches as a child. Some didn’t get or understand it. I couldn’t ride rides at the amusement park or do fun stuff because of being afraid of “having my bell rung”. As a teen, I would get the headaches around my menstrual cycle. When I was 19, I had such a severe attack of a migraine headache. It was truly awful. I was shocked at it. I would get “headaches” through my 20’s and I learned to live with them. Didn’t mean it was easy.

When I entered my early 30’s, migraines were getting much much worse. My work would suffer and when I was 31, I met my now husband. I can say the migraines would really disrupt our lives and cause troubles. I was blessed to have such an understanding hubby but it was hard for him. I could be down for a few hours to a few days. I was lucky to have some bosses who felt for me. In 2003, I suffered my first attack of vertigo. I was diagnosed with a “virus” and told it would just go away. This was the beginning of my h-ll. This would also wipe out our money. So costly.

From then on, I would suffer vertigo and at times no diagnosis, just shoved antivert in my face and on my way. I would suffer the migraines still. In 2009, I was diagnosed for the migraines as menstrual but other causes would happen. Yes I would still suffer the vertigo with no reason or cause diagnosis. This would go on and eventually be more troublesome. I went to the Er several times and just given antivert and on my way. No real cause again. So frustrating. I was working at my current job and thankful for the great bosses I had. I missed several days of work and missed out on stuff. This includes ER trips from work because of falling down. On my last trip to the urgent care, I had found a doctor who was familiar with vertigo so forth. He referred me to a specialist in Indianapolis.

I went to the Midwest Ear Institute and they were known in the state. They did extensive testing for inner ear and that was ruled out. The testing was awful but I was glad I would get an answer. I was diagnosed on Aug 14, with Migraine associated disequilibrium and was given a prescription of Elavil and a diet to follow. I was so jumping for joy that I can try to get my life back. I was also blessed for finding my doctor. I am glad I don’t feel alone now. XO


#275

Hi all
I can’t tell you how much this forum has meant to me. This is such a terrible disease and so pervasive, yet no one can understand how difficult it is to deal with unless they’ve been through it. My story - I was a very healthy, happy, active person until “the event”. One minute I was making a snack, the next I couldn’t even stand up. I was so dizzy I had to get on the floor and lie there. I called my daughter to take me to the ER and they were less than helpful. They were not sympathetic and did not even pretend to care. They told me I couldn’t go home till I could walk without a wheelchair then had my 17 year old daughter wheel me out 2 hours later - telling her that it was just labyrynthitis. I was vomiting continuously and could not even open my eyes.

Vertigo has been non stop since then. It gradually improved after 2 weeks so that I could walk with some help and I could eat small amounts of food. I visited an ENT, who told me I had vestibular neuritis and it would get better within 2 weeks. Then I went to a chiropractor who showed me the Epley manuever, which may have helped somewhat. My GP was basically useless - just kept scheduling re-visits every 2 weeks. Finally - after 6 weeks of nonstop dizziness - I got in to see a neurotologist who diagosed hydrops and migraines/MAV. This has been the most helpful diagnosis and I’m so grateful that I got in to see her. She prescribed Topamax, which didn’t work. Then verapamil. This has seemed to clear up most of the mental fog and forgetfulness (although not all of it), but hasn’t helped a lot with the vertigo. She’s put me on a low sodium diet and gave me a list of foods that were migraine triggers that I had to avoid.

So I have a follow up in a week. We will try to find a medication to reduce the dizziness - I’m not sure what yet. At this point I’m just really discouraged. I can function but I’m so depressed. I can’t do so much of what I used to be able to do. I barely make it through work every day, then drag myself home to lay on the sofa and nap until bedtime. I am supposed to exercise but can’t even get up no matter how much I try. The few times I’ve tried to go from work to do something else I’ve gotten so unbelieveably tired and dizzy I’ve had to pull over and call someone to come get me. My friends have stopped calling me and I’m afraid to go out because I might get dizzy. I don’t even go out to eat with friends because there is so little I can eat and I eat such small portions. And I eat every 2-3 hours because I’ve already lost 20 pounds (although I’m ok with that). My blood sugar now is bouncing up and down which is why I have to continue eating the small frequent meals. I even lost my best friend because I’ve become too depressed and focused on the “dizzy thing”.

Anyway - what has really helped is reading other peoples’ stories. I guess I’m not alone and if other people on this board are able to manage, then I’ll also find a way to get through. Thank you all for this board. And - I would very much appreciate any suggestions or advice.


#276

First of all, I am so thankful that I finally stumbled upon this website and forum, and THANK YOU to those who have created it and maintain it. I have been exploring the web for years now, but not ever making the association with migraines a part of my searches. Maybe that has had to do with a misunderstanding on my part of what a migraine actually is or feels like.

Given the history of how my symptoms evolved, the name “Vertigo Associated Migraine” (VAM instead of MAV) might be more appropriate, because for me, the dizziness came well in advance of the headaches. But, as so many that have written here know, whatever one calls it, it is hell. If I were living several centuries ago, I probably would have described what I feel like to a physician of those times as “being possessed by a demon”!

I used to get very strong headaches sometimes when I was very young, but they were intensely sharp, and quite different from what I feel now, and they went away quickly. I would put a cold, wet washcloth on my head, and lie down in a darkened room for maybe only half an hour, and they would subside.

The following is an attempt to clarify my current condition and problems. People think I look “normal”, but I am so far from feeling normal. Except for a few friends that know of my problem, people have no idea of what this all feels like, unless they see me trying to walk in a straight line.

I am a 63 year old European-American male. Generally, I consider myself healthy, with normal blood pressure, cholesterol, and no other real medical problems. I have had, however, Mitral Valve Prolapse Syndrome (“Dysautonomia”) for many years.

It all began about 9 am, on the morning of May 16, 2005. I had just had a regular teeth cleaning, with a TMJ test, by my regular dentist, and had taken the usual prophylactic dose of the antibiotic Clindamycin (because of the Mitral Valve thing), about an hour prior to the cleaning.

-  just after leaving his office, as I was starting my car, I noticed a slight high-pitched whine in my right ear
-  within a few hours, the noise had become severe, and I also felt a strong pressure from my eardrum
-  by the end of the day, the noise completely covered any other hearing, intensely loud, and the pressure was almost overwhelming, feeling like my eardrum was about to burst
-  after about 4 or 5 days, the pressure had subsided a bit, the ringing noise had lessened a bit, and I started to feel out of balance, and was unable to walk straight
-  within a few weeks, that "loss of balance" feeling (which at first was just almost a novelty, and not really unpleasant) started to become a feeling of solid dizziness, with a slight "blacking out" of cognition.  For example, when reaching up to a shelf to get something, I would experience strong vertigo (if that is the right definition), and a feeling of almost losing consciousness momentarily (but not like fainting).

I realize now, that I should have gone to a specialist right away, but even my regular MD, who I did see about a week after this began, thought it was just earwax, or some temporary infectious condition that would soon go away. I do not blame my dentist at all for this, and I like him, and I still go to him. And my general MD has been very understanding, helpful, and skillful in guiding me through all of the subsequent medical situations. Whatever hit me could have already been in my system, could have been incidentally in my mouth that day, or could have been lurking in the dentist’s office. There is no way to ever know.

My first visit to a specialist (a month or so later) was to an ENT doctor. He told me that my symptoms were “consistent with Meniere’s Disease”, and (arrogantly) said “live with it!” But I strongly feel that it is not Meniere’s, because that particular malady is mostly episodic, and people do feel normal for long periods of time between attacks. My problems have been continuous. I have had several hearing / balance tests, and do have some high-pitch hearing loss in my right ear.

I then went to see a recommended neurologist, who immediately connected this all with my visit to the dentist. He told me that a viral transmission had been simply from mouth, to Eustachian Tube, to inner ear. He said he had seen this sort of thing before, and, yes, the effects of such an infection could be realized within 20 minutes. He had me try a course of a very strong anti-viral drug, but it did nothing, as it was too late by then. Bacterial infection had previously been ruled out by a separate course of antibiotics.

Those first symptoms have remained, but for the first few years I seemed like I was getting better, with periods (days, maybe weeks) where they were only slightly noticeable. I could work normally, go hiking, and do my regular workouts. But they never really went away.

Beginning around the summer of 2008, things started to change, or “morph”. The dizziness started to increase, with a feeling of warmth and pressure in the inner ear. The right side of my head, near my ear, felt very dense. I started feeling paresthesia on the right side of my face, and numbness on the left side. The dizziness started becoming more headache-like (which continues today). Many times, I have stiffness in the back of my neck and head. I sometimes feel like my limbs are disconnected from my body (only slightly, fortunately!).

I can best describe the headaches by comparing them to other type feelings I have experienced in my life, but they are NOT exactly the same: (1) a minor concussion I had while in high school, (2) high-altitude sickness while trekking in the high mountains, (3) a few really bad hangovers, and (4) a feeling in the head like when hanging upside-down for a while (haven’t done this since I was a kid, but I remember the feeling).

From what I read about migraines, my headaches seem different in that I do not experience auras, and strong, steady sunlight does not bother me. I have no postdromal phase, nor throbbing.

When the current headache is bad (usually after any series of movements, like clearing out our dishwasher), or after certain exercise, or strangely, after putting in my contact lenses, they are debilitating (but they are not like the ones I had when young), and I have to sit down, and sort of just calm myself, usually by napping. The headache never goes away. It only gets less and then more again. When it is at its worst, I am almost nauseated.

Places filled with fluctuating noise and light make the headache / dizziness much, much worse. Just walking around in a grocery store can be frightening and exhausting. I can hardly stand being in a crowded restaurant, bar, or mall. I have pretty much given up meeting friends in such places. I am sure that attending a rock concert (which I haven’t done since before all of this started) would send me to the Emergency Room!

Sometimes I feel very fatigued, and barely able to function. I can sleep for 12 hours, and then need a nap 2 hours later. I feel like I could sleep for a week.

I can get very shaky, with tremors mostly in my hands and arms. My eyeballs feel like they are about to pop out, and they feel like they are moving in heavy syrup. Having to visually scan around for things, or trying to focus on distant objects makes the headache, confusion, and pressure much worse. My brain feels like it is pressing outward on my skull, and my temples feel like they are pressing in. I feel like there is a “presence” inside my head.

This is usually accompanied by a loss of cognition, an inability to “think straight”, and a feeling like it almost “hurts to think”. It is all very much like the “brain fog” that I have read about. I have actually bumped into walls and doors, not being “aware of them” as I should be. Much of the time, I see the world as if it were through a hand-held camera – jerky and discontinuous. I cannot make quick decisions, and trying to do so just makes me freeze in my tracks. I sometimes go “blank” as to what I am doing, if confronted with too much input.

I sought help from another highly recommended neurologist, who had me try the following drugs (not all at once) for various periods of time: Gabapentin, Verapamil, Clonazepam, Imipramine, Pristiq, and various diuretics. Nothing changed.

To that point, I had had at least three MRI/MRA type scans, and each time, everything appeared normal (on one hand, fortunately).

I sought help from another doctor (a specialist in microbial-type maladies, like Lyme Disease), who had me try Minocycline and Plaquenil. Again, no difference.

Around 2009, the paresthesia started to decline. The “density” and warmth has pretty much dissipated. The tinnitus seems now to “emanate” from deep inside my head, not like the original “sound” which seemed like “hearing” it in the ear. But still, when I start to get stressed, or pressured to do something, or nervous, the tinnitus ratchets up very quickly and strongly, and the head pressure does as well.

I lose many hours of productivity every day because of all of this.

One interesting thing I have noticed is that on a morning after a night filled with strong and vivid dreams that I can remember, I usually feel better.

I have since been to yet another neurologist, who had me try Nortriptyline. It had no effect, other than to produce very strange thought patterns, bad dreams, and feelings of aggression (also true with the Imipramine). I stopped it when those began.

I have also recently had a Lumbar Puncture (Spinal Tap), looking for Benign Intracranial Hypertension (everything was normal), and I have also had another higher-powered MRI, at his request, looking for Benign Intracranial Hypotension (low fluid pressure). Everything was normal.

I have tried Acupuncture, recently. It was given to me at an Integrated Medicine Clinic, by a real Medical Doctor, with training in the practice. No change after the requisite number of sessions (4). I have also tried homeopathic remedies, at his recommendation, specifically Bryonia, and Nux Vomica, in very potent (homeopathically-speaking) dosages. No change, either.

Dietary adjustments seem to do nothing.

Last year I tried Botox injections, just recently approved in the US for migraine treatment. 31 shots all around my head and neck, each treatment. This was done every 90 days, for three total treatments. Each treatment cost over $2000 (fortunately covered mostly by insurance, but not for everybody), but we discontinued as there was no positive effect. (And I didn’t even look any younger! :frowning: )

Earlier this year I tried Topamax, but it didn’t seem to work, caused sharp joint pain, and made me feel just plain crazy.

I can live with the tinnitus, and the loss of balance (to some degree), but what bothers me the most is the continuous headache, feeling of pressure and “burning” on the inside my skull, and the brain fog. It is ruining my life. I no longer feel like exercising, walking, being around people, or basically doing anything physical. I used to hike a lot, sometimes with a heavy backpack in steep, treacherous terrain, and now I am afraid to even go up or down a flight of stairs without holding onto a railing.

This is profoundly affecting my work (luckily, I work for myself). I am losing hope of having any more quality of life, and I am concerned I will ruin the lives of those I love.

They only thing that seems to help, although only slightly (it takes away some of the headache pain) is Oxycodone, which I take in small doses (2 - 5mg) when it all gets to be too much.

I do not expect the tinnitus to ever go away, or the balance problems, as I do believe and as my first neurologist told me, the neural damage is done (and was caused by a viral infection at the dentist’s office), but I am hoping for some kind of relief from the headache, dizziness, pressure, and inability to think straight. Just feeling like exercising again would be a vast improvement in my life.

I have read through many of these forums and topics, and realize there are many out there who have it way worse than I do, but any thoughts from anyone, or even shared experiences, will be most appreciated. I cannot believe (or accept, I guess) that there is no medical answer to these headaches and feelings. Surely there is some drug somewhere or procedure that can alleviate them. Maybe a visit to a shaman in the Amazon jungle is now in order!

I wish I could find a Medical Doctor who is also a victim of this malady (not that I would wish it upon anyone), who actually has these symptoms, who knows how this actually feels, and who maybe could relate to us all, and have a real “sense” for how to treat it.

Best wishes to everyone here, and thanks to you all for your input.


#277

Hi all. My name is Mandie. I’m 23 living in Cali and working as a preschool teacher. I was recently diagnosed with vestibular migraine. I’ve had migraines for years on and off (they run in my family so it wasn’t a big surprise) but they were infrequent and not horrible. About 7 months ago I started having episodes while driving where I felt dizzy and disoriented. I ended up in the emergency room and got an MRI (clear) and some pain meds to kill the migraine cycle, although the headache really wasn’t that bad, it was the disorientation that bothered me.

I was sent to a neurologist who told me I had atypical migraines and that it was only continuing to happen because I was anxious (I do have a history of anxiety attacks). He put me on topamax but I couldn’t stay on it for more than two months because the side effects were miserable. After that the neurologist wasn’t much help, and I was waking with headaches every day. I started just taking Advil and trying to deal as best as I could, and felt better for a little while.

Then the really bad dizzy spells started. I would feel dizzy and really weak for days or weeks at a time and nothing would help. I thought I was going crazy. Looking back, I also had this awful creepy ceawly feeling in my ear as well as other symptoms. I went back to my regular doctor who did lots of tests and found nothing. He sent me to a cardiologist who said I had restless leg syndrome, maybe. (at least point I was rarely having headaches, just dizzy and weak spells). I finally did my own research and asked to be sent to an ENT thinking maybe I had labrymthitis or something like that.

I went to the ENT and after describing my symptoms for about 2 minutes he said he knew exactly what it was and that I was “textbook” vestibular migraine with tmj making it worse. He spent over an hour with me and was more sympathetic and helpful than any other doctor I have seen by far. He said that I need to get in right away to a neuro and find the right prevention medication as well as start the diet modifications.

I’m extremely thankful to finally have a diagnosis and not just feel like a crazy person. I’m hoping I can find a good neuro and have a better experience than I did on the topamax. I’m currently in my last year of college, working full time an fulfilling internship hours so this whole thing has been so discouraging and frustrating because it will completely take me out for days at a time. After seeing some of the other posts I guess I am fortunate to have found an answer after only 7 months rather than years. If anyone had any advice or encouragement, please feel free!! I’m new to all of this and feeling pretty overwhelmed by what lies ahead.


#278

Hi all! I wanted to post my story to introduce myself to the forum and to solicit advice. For the last several days I’ve been suffering from a feeling of motion sickness, what I think of as “vertigo”, that has, literally, had me bedridden. The one time I tried to go to work, a couple of days ago, I became so ill that I had to have a friend drive me home. Since then I’ve either been confined to bed or afraid to do anything, such as hop in the truck to grab a burger (if I weren’t too nauseous to eat), for fear of starting the vertigo again. It is one of the worst things I’ve ever had to experience. It is made even more so because you have the feeling, since you’re not gushing blood from an obvious wound, that people think you are not really very sick or that you should be able to tough it out. Well, I don’t know how anyone toughs out being motion sick to the point of vomiting.

I’m a 50 year old male with no prior history of headaches, of any kind, or vertigo. I do have a history of depression, going back to my youth, that has been treated with various anti-depressants. I currently take 120 mg Cymbalta for the depression along with 100 mg trazodone for sleep/depression. In addition I take Synthroid, 35 mcg, as well as a prescription iron and vitamin D. Prior to attacks of vertigo and the trazadone I had been taking the tricyclic, amitryptiline 150 mg, for sleep/depression. Since the vertigo came on while I was taking the amitryptiline, indicating tricyclics wouldn’t be effective for my MAV, my neurologist started me, about 3 weeks ago, on Depakote Extended Release 500 mg per day. I’ve recently had an extensive MRI of my head along with various balance tests performed by my ENT that have ruled out tumors, inner ear problems and, probably, BPPV. All evidence points to MAV although my neurologist always hedges his bets on the issue. I get the sense ENT’s may be quicker to diagnose MAV than neurologists, however, that may just be my experience with these particular individuals. That said, I like them both and they seem to be highly qualified.

My problems started 4 years ago, back in 2008, on my way home from work. I don’t remember what time of the year it was or whether or not I was particularly tired but I do remember I started having symptoms of motion sickness about five miles into my ten mile trip. By the time I turned into my neighborhood, with a half mile to go, I didn’t think I was going to make it into my drive. Over the next few days I experienced more attacks, mostly during the day and at work, culminating in one that left me so debilitated I had to get a ride home. I scheduled an appointment with my first ENT who told me, after an MRI and a hearing test, the symptoms were, very likely, caused by a viral infection of the inner ear; an infection that had, probably, already passed leaving some damage in its wake. He told me the damage would take time to heal but, in a few months, I would, probably, be OK. In the meantime he gave me some exercises to help speed the healing process. Of course I’m not OK, in fact, I’m worse than ever, but, I’ve learned, given my symptoms, that this is the normal diagnosis.

Since that first bout my problem has slowly developed from something that causes motion sickness to something that causes motion sickness plus headaches. I’ve become (or realized I am) light sensitive as well as motion sensitive. Bright lights when driving can, almost immediately, cause a headache. Driving oftentimes causes the motion sickness; I can simply look the wrong way when turning and, pow, I’m seasick. In fact, merely looking at a row of brightly colored products on a store shelf, a pattern in a carpet or watching train cars pass in front of me can trigger dizziness, sweating, headache and vertigo. Along with these symptoms I’ve also developed a crazy feeling in my forehead. Sort of like a ball of worms moving around, or a tightness (that seems to squirm around) such as one gets when wearing a hat, right in the center of the forehead. This crazy feeling is constant–varying only in intensity. The only time I’m ever without it is in the early mornings, before it gets light out, just after I’ve awakened. After a few minutes of being awake, even if it is still dark, the crawling sensation always starts back. It seems to bear some relationship to the vertigo in that when it is most intense the vertigo is usually at its worst. That said, an increase in intensity doesn’t necessarily correspond with a headache or an attack of vertigo, and, nowadays, the vertigo is far worse than the headaches. The vertigo seems to cycle, coming around every 2-3 months, with each attack leaving me bedridden for days. My neuro tells me this last attack could be a side-effect of the Depakote but, even given this latest attack, he wants me to try my best to stay with it for 6 weeks. After 6 weeks, he tells me, the side effects should subside and the drug will start doing its job. If, after 6 weeks, it appears I’m still having debilitating side effects he will change me to another medication–probably Topamax. His nurse reminded me that, when he started me on the Depakote it was with the understanding that it would be a long term treatment; that I wouldn’t truly know the effectiveness of this therapy until I’d taken the drug for 6-12 months. I just hope I can make it that long.

I suppose this has sort of been one long primal scream of frustration but I appreciate the forum to scream in! From everything I’ve read so far it appears my docs are following a fairly typical model of treatment for the MAV so I really don’t have any complaints in that arena. I’m mainly tired of an illness that few know anything about and even fewer, outside its sufferers, understand. If anyone has any suggestions I’m completely open. Thanks for listening.


#279

10 years of vertigo… this is gonna be long! :smiley: I’ll try to summarize!
I am curious to find out if some of you will find some similarities between your and my story/symptoms. Please let me know if it’s the case… any info could help!
Thanks to those who created this forum… it feels good to see i am not the only one living this challenge. So thank you thank you thank you!

HISTORY/SYMPTOMS
As a child, i often had motion sickness but i don’t remember experiencing any kind of vertigo. However, at around 6 or 7 years old, a door closed on my neck/back of my ear and i remember crying and screaming because it was horribly painful.

Vertigo started in 2002, a couple of days after i got hit in the head by someone who was bodysurfing at a concert. I woke up one morning and i felt like my brain was loose in my skull… weird feeling. I should mention my mom had vertigo a few days after she visited me so i have always wondered if my vertigo was first triggered by a labyrinthithis.

I have always noticed a connection betweet my neck pain and vertigo but back then doctors would tell me it was impossible and only the inner ear could produce vertigo.

At that time, everything was spinning 24 hours a day and i was not able to stand up nor leave my appartment for the next 2 months. I saw a bunch of specialists who made me do lots of exams including an MRI of the brain (no brain tumour no multiple sclerosis) and caloric test (negative) and finally told me : we don’t know what you have or when it will stop. That’s when i got really upset and i decided i was too young to stop my life (i was 25) and i focused on finding ways to get better so i could realize my dream : go to Australia (i live in Montreal, Canada). It took me months of osteopathy (she treated the back of my head/neck) and i was finally well enough to go on my own for 6 weeks to Australia/New Zealand. Had the trip of my life and even surfed! :smiley:

In 2007, i hit the top of my head, and started having vision problems (lights and flashes stay printed in my eyes for a long time and i see like a “ghost” of my arm following it, as if the image stayed printed in my eyes or brain for too long. So i kinda see 20 blurred and transparent images of my arm , each of them at different stages of the movement. This also happens with carlights when it’s dark outside. Anyone knows what it’s called? ) which are worse when the lights fade or when i leave a dark room and there is lots of light or the opposite. Seems to be related to change in light intensity. Sometimes i have it every day, sometimes not at all for a couple of days. I also feel like i can never focus really well on what i read. I had many eye exams and they did not find anything. The neuro-ophtalmologist said she’s seen a couple of cases like mine (the visual stuff) but doesn’t know exactly what causes it and what to do with it.

In late 2007, i had a huge pain in my eyes while i was on a trip in California. I saw 3 doctors and they never really figured out what it was. I don’t know if there is a relation between the two events.

In early 2008, my neurologist requested i do another MRI of the head because of my visual problems.

Later that year, i had another incident with my head, and vertigo started again really bad, this time with huge headaches and neck pain and blurred vision. Doctors did the epley manœuvre and it helped, and so did osteopathy and physiotherapy but it never really went away… small vertigo everyday and big episodes every once in a while.

I have stopped doing sports (except walking) for the past 5 years as they triggered vertigo… not during the exercice but the next morning. I have tried everything… bicycle, swimming, running, aerobics…. everytime the next morning it spins and i can’t get up. I am curious to see if that is the case for someone else.

In 2011, i had two lower back hernias after sneezing… !! (yeah, lucky me ! :lol: ) and i had bad headaches and vertigo because i had to lay down all the time. I think it probably triggered migraines. I also started walking to the left sometimes (ie. i am trying to walk straight but i feel something is pulling me and i end up bumping into trees, looking like a drunk hehe). also, sometimes when i stand still, i feel like i am going to lose balance as if my feet were not connected well enough to the floor. This really bothers me, but i learn to deal with it. It seems to be better since i have started the exercices prescribed by a physiotherapist specialized in vertigo treatment. I decided to go see my neurologist again, who made me do lots of other exams… (EEC, brain scan, another MRI of the brain, a bunch of ophtalmic exams, cardiology exams, a scan of the neck arteries etc.) all negative.

In november 2011, i had a huge ophtalmic migraine. The first one where the symptoms were obviously showing a migraine (visual aura). The headache lasted for 4 months non-stop.

Now i only want to get better so i can travel again and go back to Australia! :slight_smile:
**
DIAGNOSIS**

In 2012, when he got the various exam results, my neurologist said it seemed to be migraines and prescribed flunarizine, saying it was the best anti-migraine medication he knew and that i may take it just for 3-4 months and it could stabilize my migraines so i can take just ibuprophen every once in a while after.

I also saw a physiotherapist specialized in vertigo diagnosis and treatment (visual and proprioception exercices, which seem to help) said my vertigo seemed to come mostly from migraines but also part of it from bad proprioception and an inner ear problem, as , for example, my eyes showed nystagmus when i rotated on a chair).

My own observations : – have you also noticed that in your case?
I have more vertigo attacks when (which doesn’t mean it happens everytime i do the following things but i have clearly seen a connection) :
-I eat too much — I often see a link between vertigo and digestion and when i have a big vertigo attack, drinking water with lemon juice helps so i am wondering if the liver or other digestion system has a link.
-I eat too much almonds or other nuts

  • i spend too much time on a computer, especially if it is not well ajusted
    -I sit down with my torso not straight (ex. at a conference if the speaked is not straight ahead of me and i slightly turn my upper body towars him) or any position that will make tensions in my torso or stomach (almost garanteed i have vertigo when i do that)
    -Do sports (vertigo the next morning)
  • I stretch my upper body
    -wear a belt around my waist
    -put my hair in a pony tail or bun on top of my head
  • my upper body is sore (spasms) or my neck hurts
  • I am going to be sick (vertigo the day before i actually feel the virus)
  • I am going to have my period
  • Don’t get enough sleep

I am curious… has anyone been taking valtrex for a long time ? i have been taking it for 10 years for cold sores and have wondered if it could be responsible for vertigo…

My mom and sister also have vertigo attacks… not as often as me though.

MEDICATION

I tried Serc, but it did nothing for me.

The only medication i have been using for the past year and that has worked for me are ibuprophen and other anti-inflammatory like naproxen. Doctors never believed me it worked or could not understand why it did, and are still wondering why, although my neurologist think it might be because they work on the migraines. If i take naproxen every day twice a day i rarely have vertigo and headaches or visual troubles. But doctors don’t want me to take it all the time because it’s not really a medication you should take in a long term process.

I took it for 3 days last month and was impressed by the results: no vertigo and i was stable when i walked. Muscles everywhere in my body were soooo relaxed too! Could be a coincidence but i doubt it. I will try taking flunarizine again, but i have to admit i am afraid because it may cause parkinsonian-like syndrome and it may be irreversible. It also may cause weight gain and depression. Not many people seem to have tried that medication, and the pharmacist told me that not a lot of research has not been done. That being said, since i seemed to feel a lot better on flunarizine even though i only tried it for 3 days makes me want to try it again. And the neurologist said it is just for 3-4 months.

OTHER TREATMENTS
Osteopathy
Physiotherapy with manual therapy
Proprioception and visual exercices
Naturopathy diets to see if food triggered vertigo and besides nuts and dairy it seems fine.

Any comments? suggestions? questions?

Hang in there everyone :slight_smile:


#280

Hello JamieH,

Thanks so much for your post. Finding this forum was such a relief for me as i finally found people who had similar symptoms, and getting responses like yours makes me even happier. It’s so hard that no one around me really understand what i am going through. Anyway, thanks a lot for your reply! :smiley:

I will try taking flunarizine again, but i do have something to lose, as it may cause parkinsonian-like syndrome and it may be irreversible. Not many people seem to have tried that medication, and the pharmacist told me that because of that, research has not been done as much as for other more commun medication. That said, since i seemed to feel a lot better on flunarizine even though i only tried it for 3 days makes me want to try it again. And the neurologist said it is just for 3-4 months. I just wished more people in this forum had tried it and shared their experience.

How are you doing ? I read the thread where you were mentioning computer screen trigerring your symptoms and you wearing special glasses. now that it’s been a year… what do you think? do you still use them? Using computers also gives me symptoms, but i think for me it’s more a question of posture. If my body is not straight or if my neck is bent, it will trigger vertigo.