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Hello. I am hoping to make some new friends in difficult trying times.

#1

Hello,

My name is Sara and I stumbled across this website accidentally while googling something about the medication for Topiramate. I couldn’t help but look around various topics and gain enlightenment and feel sympathy for various users on here. Because I can relate first hand to a lot of the symptoms and the emotional ties that the attacks and vertigo brings. I was debating on whether I ought to join or not but I decided that I should. Because recently I’ve been having massive problems with vertigo that has put my life on hold which is extremely depressing.

I feel that I should warn ahead of time that this post might be long because I wish to introduce myself, in a wider scope of who I am. And I wish to explain of how my lifelong relationship with hearing and vertigo has been. I sincerely hope to make friends with you here as I could sincerely use them. I will make a full list of symptoms at the end of this post.

As I stated before, my name is Sara. I just turned 30 on the 3rd of April. I used to live in Michigan but I moved to Washington state about 7 years ago. I moved here to be closer with my ex, which was a 6 year relationship which ended about a year ago. I am an only child, I am a proud parent of a 3 year old pomeranian dog named, Kimchi. I work in the aviation business. (Locally. I knew from the start I could never do a traveling gig.) My parents moved over from Michigan to be here with me and I am currently with them right now. (Given my current state of vertigo, it is a life-saver.) For hobbies, I enjoy drawing, singing, and, occasionally gaming when I have the time to. I definitely enjoy cooking and baking, and, definitely enjoy interior home decorating. I would consider myself to be a person more on the introverted side than extroverted.

As far my vertigo problems go, they stretch back to as far back as young as 5 years old, I believe.Probably even before the age of 5. I was born with issues straightaway, I wasn’t technically supposed to live throughout the night and if I did, I was to have an array of problems. Everything from being blind to deaf, mental issues, mobility issues. It seemed my Mother caught some sort of virus when she was pregnant with me and the doctor had ordered her to delay the birth since I looked so small? Or at least that’s what I’ve been informed.

I had some delays with milestones with walking but therapy helped me with that. As far as I can tell, I have no signs of visual issues nor mental issues. The only thing that did stem from the pregnancy was hearing loss. The school caught on in Kindergarten when they realized I wasn’t responding to my name as fast as the other children. Hearing tests did confirm this and I had bilateral hearing loss. My left side is near deaf and my right side is ok but not the best. I was fitted with hearing aids. Now around this age is my earliest symptoms of vertigo spells I’d experience. They would occur mainly at night while I was sleeping. It would be rare to get them during the day time but I do recall getting one at school during gym once. I blamed the animal cracker at the time.

At the time, since I was so little and I didn’t really understand what was going on. I would wake up in the middle of the night screaming my head off. Thrashing around on my bed, being generally confused and very very dizzy. Generally, either one or both parents would rush into my room and turn on the lights. Which led to very long hours of my parent(s) being up having to watch over me. I also didn’t understand the impact of my words until many years later upon reflection but chanting that I wanted to die for hours, probably wasn’t the best choice of words. But these nights were mostly spent vomiting for hours, laying down occasionally trying to sleep in frustration but vertigo preventing it, and, having the television on. I also eventually got the stupidest idea, it seemed wise at the time, to crawl around until I made myself completely exhausted. It didn’t help at all but gave me carpet burns along with injury. Typically these night vertigo attacks lasted around 3-4 hours max before it stopped. The only way I knew I stopped was when my body started to shiver and I’d get the chills.

I’d be getting these attacks pretty often but not so often where it was affecting my life that I couldn’t go on with it. I’d just need a day of recovery and I’d be back at school. I believe it was around the mid or late 90’s that more research of the inner ears disorders had been done. And my Father had just randomly popped onto the internet while I was in the middle of a vertigo attack one night. The website he was one claimed that MSG and salt were a bad combo. In my household, MSG and salt was a very common food usage and not surprisingly I was also big into eating instant ramen packages as well. So I thought, well, let me try cutting back on the ramen and let’s see what happens. And there was a such a huge improvement. It was night and day. Since then my Mother has cut out lot of recipes with msg for me. I’ve been fortunate to find that Korean brand ramen do not carry MSG in their instant ramen packages and I am able to indulge guilt free occasionally.

Since then my nightly vertigo attacks were reduced to about 1 to 2 a year. When I was a kid, I was able to do roller coasters without fear. I did rides with loops, I rode my bike (even managing to master the superman trick), spun around in computer chairs. All sorts of things that I took for granted that I cannot do nowadays. I was fearless of dizziness and I had no boundaries and took no prisoners. Sure I had the occasional feeling of being knocked off course but merely shrugged it off. I remember having a few problems with my sinuses. Both involving the common colds that stayed a little longer than they should’ve and turned into sinusitis. One was severe where it plugged my hearing completely and I was just about deaf. I can clearly remember the worry in my Mom eye’s as she tried to talk to me. The way her eyebrows scrunched together. But eventually I regained my hearing with no issues. I just thought that my life would be practically simple in regards with balance and hearing. Wearing hearing aids and deal with some occasional vertigo. But things changed drastically by time I reached senior year of High School.

When I was in 12th grade, I started to have some ringing in my ears. At first I thought, it’s just the ringing in the ears that come and go. But they didn’t go away. It stayed and made it’s home in my head since 2007. Now I am partially to blame since I was misusing my headphones to hear my music louder to compensate for my hearing loss. It was a habit I formed that I’d do before my classes started for school. At the time, I was going nuts and I was having headaches and having trouble falling asleep because at night the ringing was so much louder. I was worried that something was wrong and went to see my ENT.

My ENT wanted to rule out that it wasn’t any sort of brain tumors or cancers forming within my head. So I went for an MRI and that came negative. I remember at the time also taking an VEMP(?) I don’t exactly recall which form of the vertigo eye test it was. I do recall them putting electrodes on my forehead at the end and telling me to just relax. I don’t remember clearly the results of the test, other than my eyes and inner ears were not working as well as they could be. And that I needed to do some physical therapy for the vertigo. Which I did and I did practice at home and I did do them occasionally. But I honestly did not find them to be much help.

But as time went on, I got used to my tinnitus (as I later found out it to be.) I don’t remember what a silent room sounds like completely. Although once or twice, my tinnitus has stopped just enough for peace and silence. Then to flair up again, so there’s that. My life went on and I just figured that was that I was going to have to live with. It seemed bearable with hearing aids as well. I eventually moved across the country to be with my (now ex) boyfriend. It turns out that this is where most of my headache of vertigo kicks in. The most misery I’ve experienced with it to date.

I moved to Washington and things started off pretty decent. It’s a nice change of pace and I didn’t exactly have a job just yet. But I was searching and my ex’s truck died and I remember he was trying to set up a deal with a coworker to buy a vehicle. But at the time we didn’t so I was walking a lot and buying a lot of things desperately needed for the apartment and carrying by hand. One day I went to the mall by the house and I ate some pizza and began to walk home and then I started to get dizzy. I was in a lot of pain too and it wasn’t a typical normal vertigo spell but I was dizzy for sometime. My ex wasn’t able to get home until late at night and this was the first time he’d seen me with a vertigo spell. He said, I looked like a turtle who flipped over and couldn’t get upright again. And somehow that stuck with me since then. He said, it looked like I had severe dehydration possibly from all the walking I could’ve been doing since then. I got through the night and that was just the tip of the iceberg of problems.

At that point I started to get this vertigo. I’ve never had this type of vertigo before and it was honestly just annoying. It felt like a lag? Like a video game lag? Where every time I moved my head, my eyes would take forever to catch up to where my head moved. I thought maybe it’d go away eventually. Except it didn’t. I had no insurance at the time either. So I was trying to hold out on trying make a special trip to the doctor. Maybe it just needed some time. I ended up getting a job, a car, trying to just make most of my life with this vertigo. Driving was hell I needed to take plenty of breaks but eventually I got back on insurance and I was able to see a doctor. I went to see a regular doctor who had no idea what was going on. The ENT I saw had no idea but sent me to a physical therapist and it was there that I had an Epley maneuver done and lo-and behold, afterwards, the lagging just seemed to go away. Life had resumed back to normal and I was just beyond relieved.

So I just went on with my life, I just thought, maybe it was just a weird fluke with me moving to Washington and my body just had a hard time adjusting. That lasted over the span of several months before I got relief. But then a few years later, I got hit with another ballpark of vertigo. Currently I can’t remember the hard details of it except that it was like a vertigo that was hitting me everyday. And I definitely know that I had called out twice in a row and the company policy was that you couldn’t call out three times or you’d be sent to HR to be dealt with. I called out twice and I went back on my third day and I was sitting at my office desk. Trying to to deal with two computer screens at one. My vertigo couldn’t handle it and I was sent home and it counted as a third day against me.

My ex (in his judgement) took me to HR which was offsite the airport which I wanted nothing to do with. I just wanted to go home and lay down and make the world stop spinning. So the very nice lady at HR gave me an FMLA sheet and told me to get this filled out by a doctor. Which I got signed off and I was able to get some time off work to recover and it gave me enough relief to get back to work to be at least somewhat functioning. From what I can remember of that episode anyways.

Since that episode I didn’t have anything until of last year. It started off with pressure in my head and unable to pop it. Occasional clicking sounds in my jaw it seems. Feeling pressure behind my eyes as well. The biggest culprit was this new type of tinnitus! It was beating in my head in time with my heartbeat. Like I could hear my heartbeat in my head. I could also hear the steps I took and at times I couldn’t hear anything but my tinnitus which made work very difficult to get through. I couldn’t sleep at night without putting on music at full volume to distract the heartbeat in my head. Then I started to get dizzy from the pressure within my head. I would have the night time vertigo attacks but then, I’d have them in the day time. I’d also have the sensation of being dizzy constantly. I started to have to call out often.

I went to a new ENT near the new home location of my parents’ home. I explained everything to him and he straight out said to me that there was nothing he could do for me. Had me in his room for maybe 10 mins top and sent me into the hallway to get a blood pressure done which was normal. I was beyond angry. To be fair, I should’ve noticed how quick patients seemed to be coming in and out. I didn’t go back.

My Mother came back from Korea and she brought antibiotics and I took them and it seemed to cleared it up a bit and went back to normal. Thought maybe there was an infection or something and it was cleared up.

But it came back closer to the end of last year and started to have the pulsating tinnitus (I found out the term for it), I’m now unable to pop my ears or have the sensation of them popped. If they’re popped, they’re instantly sealed again. I did have my jaw pop once and it helped the first time but it only made the pulsating tinnitus return again. At times the pulsating tinnitus is so loud that I can’t hear anything again. Plus voices pitches become warped and sometimes much deeper. There’s so much pressure in my ears that it builds up behind my eyes. Like it feels like my eyes are throbbing sometimes in time with the tinnitus which makes things appear to be moving (when they aren’t.) I have also noticed now my eyes constantly get red and bloodshot. I have sound sensitivity at times which can add to vertigo. I’ve now been getting headaches and this feeling like something is squeezing around my spinal cord in my neck at times. I occasionally get a tingling sensation in my forehead too. My vertigo attacks only used to be once or twice a year. Now I’m getting dizzy or vertigo nearly almost everyday or feeling off balance at the very least. I definitely have nystagmus. I have to keep my hair tied back and wear a headband to keep the baby hair out of my face. I also been wearing my hearing aid 24/7 even when I sleep. That’s how bad I feel, I feel like I need in or I’ll get sick or something. I’ve been going to work and going on the computer and falling to the floor because I felt so dizzy. I can’t watch tv nor youtube as I much as I used to. I can watch very little videos without feel too bad. I can’t drive. I feel paranoid about getting vertigo attacks and I honestly been feeling very depressed by the sudden change in my life.

I went to a new ENT who has been nothing but a trooper who ordered an VNG test and an MRI. He thought I might of had Superior Semicircular Canal Dehiscence (SSCD) which is like a bone opening in the canals in the inner ears. Sadly it wasn’t because it could of been treatable by surgery. I honestly keep thinking it is or maybe it’s wishful thinking. It’s also not Meniere’s disease either. Which the MRI came back clear of brain tumors/cancers. Said I was a little stuffy in the sinuses. Might be having migraines. The VNG test came back saying that my results looked something that a 90 year old result might look like. I think my left ear wasn’t really responding much to the hot/cold air test. Both ears didn’t so well generally. So I’;m going to be doing some physical therapy. He wants me to see an ophthalmologist. And he’s sending me to his friend who is specifically just an ear doctor. The ENT I saw knows some ear stuff but he does mostly sinuses stuff and such. So he wants to make sure I get thoroughly checked out.

I also went to see a neurologist who checked me out and he thinks I’m having migraines by my descriptions of the headaches. So currently I’m on Topiramate 25 mg and gradually working my way up to 50 mg. Then returning to the neurologist and seeing if it helps. While it hasn’t been a full week yet, I have seen some improvement with the Topiramate. I am able to actually leave my bedroom and leave the house. I’ve been stuck in my room for days. I am just beyond stressed and paranoid because I just don’t know when it’ll strike. I staying calm the best key of action and I’m trying my best. If anyone has any suggestions or insight, I’ll take it.

I’d also like to apologize for the long post. I will edit just to make all of my symptoms clearer to read and less confusing. If this is too long, please let me know and I’ll be happy to omit my long post as well.I just wanted to paint the full picture of the problem of how drastic of a change this is for me. Thank you. Sara.

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#2

Hi Sara and welcome from the UK. My, that is a long one. Longest one I’ve come across so far. Sure you’ll find lots of like minded folk on here to converse with. That’s sure some history. As you’ve now got a MAV/VM diagnosis and you have been
prescribed Topamax I’d say you might have just hit upon the right track at last. Most Mavers have protracted journeys before that although perhaps quite so protracted as yours appears. Well you seem to have lots of indicators which sound typical of MAV. Reaction to pizza (if you haven’t been put on a Migraine Diet, seek one out PDQ woukd be my advice cos that’ll help immensely), ear pressure, ears too full to ‘pop’, pulsatile tinnitus, the headaches and vertigo attacks, reaction trying to deal with two computer screens at once (many people, me included, found even one totally impossible for months at a time), all very typical. There isn’t a definite test for MAV but they do say if you respond to the preventatives which you seem to be doing then it was MAV!

Certainly not something to be sad about, NOT having SSCD. Fortunately it’s very rare by my understanding so rare I saw TV Prog where a female with it in UK had to travel to US for confirmation disgnosis and treatment. I think operations to correct the thinning don’t necessarily sort the balance issues are still pretty unusual and recent and not at all straightforward.

Well considering your journey you sound pretty much uptogether to me and very sensible in your approach to what life’s thrown at you. I’d say you are doing great which should help you on your continuing journey. You’ve got out the bedroom. That’s great. The MAV journey is one of many little steps. Goid luck. Helen

#3

Trying to deal with two computer screens at once

Thats me…thats why ive lost 35 days work this year alone. Massive trigger
And yes i know i need to do something about it…Helen😁
Jo x

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#4

Hello and welcome, sounds like your on a path to helping yourself get back to enjoying life more. I can sympathize with the computer screen issue, had to leve my career because I couldn’t take the screen usage 8 hours a day all day anymore. MAV may force you to make some tough decisions, but it’s all in an attempt to get back to as normal as we possibly can be. To give you some encouragement, I’m also 30 with some ear damage like yourself and managed to get everything generally under control after almost a year of battling the worst of this, so it is possible and plenty of hope, I’m in the midst of a relapse now, (tried one last time to go back to the high stress comouter job, not a good idea) but getting back go baseline is something that will happen again eventually. You have to take it a day at a time and measure progress in weeks and months with this, not days. Regardless we are here for you on your good days and bad, keep looking around the forums, there’s a wealth of information here

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#5

Welcome sara,
I was born with vertigo too, it was mild initially, but slowly everything spiraled out of control, now it’s with me 24/7, only benzos reduce my vertigo, and i am dependent on them. I had abnormal vng tests too, and the ent neurotologist said that my left ear does not work properly. I have significant hearing loss, but i dont get tinnitus.

#6

Welcome! Topirimate is a great medication to try first. It’s hard sometimes to know whether the migraines are causing dizziness or the dizziness is causing migraines. In my case I think it’s mostly the former, but for others diagnosed with MAV it may be the latter. That’s why I think it’s a good idea to continue to follow up with an ENT or otoneurologist. My vestibular nerves were apparently sensitive enough to make my throw up during the VNG and I wasn’t able to finish the test to get the data. :tired_face:

Not sure where you are located in Washington, but if you are in the Seattle area there is a great meetup group for people that are dizzy:

I will be there next meeting. Good luck with your treatment plan and welcome to the forum!

Erik

#7

Echoing Erik, welcome Kimchi! We have some great doctors in the Seattle area. Try to see a neuro-otologist at Swedish or Harborview if you can. And bring along as much information as you can - like your post above plus information from this site. Check out our wiki’s, look for Dr. Timothy Hain’s website. We have a wealth of information. Unfortunately these diseases/syndromes tend to be amorphous and not well understood. That means you need to become an expert and arm yourself with information to take to your specialist.

#8

Thank you so much, Helen! I am considering on changing up my diet and seeing how that goes. I honestly am not sure if this vertigo problem was brought on by hormones issues either. Since I just recalled about it but I dunno if this would be the right topic to ramble on about it.

But this site is definitely what was on my mind while I was having my severe attacks. “Gee, I sure wish I had someone to talk to that could relate to how I felt.” Makes me feel happy.

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#9

Hello!

Yes. I work with the transfer baggage system for an airline company. So I have to do use dual computer screens in order to manage and compute information. Definitely a lot of scrolling around and looking between the two computer screens. I also mange radio calls and telephone calls on top of people randomly waltzing within my office. It’s a very stressful work environment. I used to be ok with the dual computer screens but now it’s just way too much for me to handle, unfortunately. It’s just very stressful because my HR just hasn’t seemed very cooperative with me and my illness.

#10

Hello!

I can definitely sympathize with the computer issue as well. I spend around 12 hours per shift on the computers for work. It’s just mind numbing and I can’t do it anymore. I find it way easier on a single screen computer such as my personal computer or laptop. I’ve even managed to hook my computer to the TV screen lately and that seems to help. I am really considering finding another job where I don’t have to do the computer issues anymore. Plus I won’t be spending so much time doing commutes. Driving is hell and especially at night and when it’s raining. But the problem is that I just need to have the health insurance since I have more appointments coming up soon.

But it’s refreshing to know that it can be managed and if it’s the computer aspect of things that are making things worse. Then maybe I need to do a career change and fast. I will try to take it day by day and try to learn as much as I can to make life easier and manageable.

I hope you feel better asap with your relapse and that it goes away. I’m sorry the computer career aspect of things didn’t work out as you wanted. Maybe there could be something out there with less computer and less high stress?

@methanol

Hello!

I’m so sorry that the vertigo spiraled out of control. I wish vertigo was something that was easily treatable and people would not have to suffer as much. I also feel for you on the abnormal VNG tests and it was the left ear too. My only suggestion is to really protect your hearing to prevent tinnitus if you can. I work at the airport and of course, there’s airplanes and loud noises, I see people forgo earplugs/ear protection all the time. It just makes me sad. Glad to hear that something at least gives you relief with medication though. Take care of yourself.

@ander454

Hello! I’m trying with this Topirimate stuff. It’s been so so, thus far. I honestly don’t like the feeling of being drugged up generally. But I have no choice. The side effects haven’t been too severe so far. I do get occasional tingling in the hands and feet, pop tastes horrid, I get occasional hot flushes. I do find it very hard to sleep at night at times. For a few reasons, one reason is that I think it’s mainly out of paranoia that I will get dizzy. Two I think it gives me like a “high” sensation in my head- it’s hard to describe but my dreams are so vivid and they switch so rapidly. I wake up often, about every hour or so to stare and refocus and to make sure I’m not actually dizzy then fall asleep. Repeat the cycle. But I’ve started to take my Topirimate with valium. It’s a 5mg pill but I crack it in half. I once took the entire pill and I felt like I was tripping. So I stick with the half of the pill and I’m able to get a full night’s rest. Now tomorrow I’m starting the 1am 1pm regimen of the Topirimate so I have NO idea how that’s going to go down.

I’m sorry that you weren’t able to get the data needed. It’s a hard test to get through! I got dizzy several times and it was just from laying in the chair and the doctor moving the chair. I thought she was spinning the chair. I asked her if she was done moving because I got upset. Kudos to you for trying your best and that’s what matters!

I actually live in Tacoma but I work in Seatac so Seattle isn’t too much further. I will definitely have to check this out! It’s so nice to know there’s a local group. Might I ask what part of WA, you’re from? And do you find it hard to deal with the weather here at times, particularly when it’s raining? I hope we can meet sometime! Thank you, Erik.

@flutters

Hello!

Thank you! I’ve heard about Swedish a few times but never heard of Harborview. I saw of an neurologist somewhere in Tacoma, I believe. But if you are suggesting that I should see someone in Swedish or Harborview, and they accept my insurance, I shall try. I know my ENT wanted me to see an ENT of his in Seattle but I’m not sure of the doctor’s name? I will know when I get the referral hopefully. I was planning on using the post I made and bringing it to the ENT as well. But I will check out the information listed within the website! I also just am curious as to why doctor appointments here seem to take months to actually get in the door? In Michigan we never had this problem? Or at least from what I remember. It was always within a week or so, not months.

Thank you so much for your help, Flutters.

#11

You might try to get in with So Hee Kim at Valley Medical in Renton. She’s part of the neuroscience institute headache clinic. I’ve been teaching her to treat MAV.

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#12

Thank you! I will check into that tomorrow asap.