New - waiting on MRI - scared

Specific Illnesses & Conditions VM/MAV
1

Hi there,
I really appreciate all the information this board offers. I have been suffering from vertigo/dizziness for about 5 months now.
I am 27 - seemingly healthy (low bp) (I don’t drink alcohol, coffee or smoke etc)

At this point all of my life activities have pretty much ceased.

I went for a run in July and when I got home I checked my cell phone and the looking up and down motion made me feel quite dizzy. I assumed I was getting a bug and went to bed, but when I awoke it was still there.
It progressively worsened to the point where I could barely eat and take care of myself. I never had severe vertigo just constant dizziness.
During this early time I had a wisdom tooth infection on my left side which resulted in a tooth extraction and antibiotics (which did not help the matter).
My doctor believed I had an ear infection and said it would get better in a couple of weeks.
I was also sent to the ER at one point because due to lack of water and food and anxiety the dizziness resulted in a panic attack. I was sent home with the same diagnosis - ear infection.
I had a nystagmus which seemed to indicate it was my right ear.
I was sent ot a physio who firmly believed it was inner ear damage to the horizontal canal in my right ear and gave me exercises to do - none of which helped the problem.

Here I am five months later and my whole life has pretty much ceased to exist. I try to go for walks, go shopping etc and all of these things exacerbate the dizziness and uncomfortable eye feeling to the point that I need to go home and nap.
I was referred to an ENT who believes I may be experiencing MAV. She says my ears are fine. I am being sent for am MRI but I have to wait up to another 4 months for this to happen.

Recently I started to experience tingling in the tip of my nose and mouth area. Neither my Gp of the ENT seem concerned with this.

I am foolish and googled it and am terrified I have MS.

The other strange symptom I have is feeling heavy in the left side of my body. When I walk my left side feels “off”. My headaches (not migraine strength) occur on the left side of my head. I feel a large amount of pressure, fog, discomfort in and around my left eye region (cheekbone/eyebrow/ear). I feel off balance (though I pass balance testing tests) and my physio says I favour my left side when walking and cock my head to the left when I am talking to people.

I am told the tingling(which is not constant) and one sided heaviness can be caused by anxiety (which I am definitely feeling). I am depressed, exhausted, can’t stop crying. I just don’t know what to do.

Much of what I have heard on here rings true to how I have been feeling. I have a hard time believing the migraine diagnosis as this came out of no where and has been so consistent and bizarre.

I basically wake up in the morning feeling a little off balance.
I am working very hard to drink lots of water and eat properly.
I am not working.
I spend the day with my eyes feeling off and have trouble and get dizzy watching tv. I cannot stand to be in busy places or big-box stores as I feel so out-of-it in those places.
The only time I feel better is when I sleep and even then, when I flip over in bed I feel dizzy/nauseous (I have been tested for BPPV - definitely do not have it).
I try to go for walks and usually feel quite dizzy by the end of them.
I feel fine driving, but as soon as I step out of the car I am very dizy. I never vomited or had aura (I had migraines with both these symptoms when I was about 12-13).

I am currently on the food triggers diet (1 week) - no change yet.
I will go back to my doctor in a few weeks and hopefully try out a medication while I wait to go for the Mri (So frustrating).

Thank you for this forum and any advice or information you could give me would be much appreciated.
It keeps me from going off the edge thinking it is MS etc.

Laura

2

I should add that both my GP and ENT say that I am not presenting as a typical MS case and they don’t expect that diagnosis… but I am still scared.
My dad suffered a brain tumour when I was young so I definitely have anxiety regarding brain and neurological issues.

3

Hi Laura

Welcome to the forum. Your symptoms sound oh so familiar. Where are you based?

It sounds very much like migraine to me. If so, you have done well to find your way here relatively quickly. You should be able to get lots of information here to help you work out if you have MAV. Getting the MRI scan will also be very helpful in diagnosis as once you have ruled out things that might show on a brain scan, it is even more likely it is MAV. 4 months seems like quite a long wait for the scan. Try not to worry too much about MS. Although I am no doctor, what you describe sounds a lot more like MAV than MS. I don’t think MS tends to present with such extreme feelings of dizziness as a vestibular disorder like MAV does. MS tends to begin with tingling and numbness in the limbs which appears intermittently at first. My grandad had a brain tumour and that tends to present with severe headaches and seizures, not dizziness and the things you describe.

I hope you get your scan appt soon then if it is MAV you can start to trial a preventative medication x

4

Hi Laura,

Welcome to the forum. It is a great place to learn all about MAV and other topics as well. Read all that you can on this forum. The forum is a place where eveyone understands what each other is going through. You can ask questions… vent or whatever you want. I’m sorry you feel so bad. I was reading your post and it was almost identical to the way I started off. I could barely walk, couldn’t cook or do much of anything. I felt depressed and was crying a lot. I didn’t know what was going on. It was very scarey. It might seem like you’ll never feel right again, but hang in there you will get better with time. Most people try the Buchholz diet to begin with, which you have started. If that doen’t help then your doctor can give you meds to trial to see which one works for you. It takes time, just keep a positive attitude and know that you will get better. I understand what you are going through. Hope you feel better soon :smiley:

5

Hi Jem & Kathy G,

Thanks so much for the reply. It is SO nice to talk to people who have experienced these things. Helps put my mind at ease a little.
I’m in Vancouver, Canada. We’re on public health care so MRI’s are long waits (between 1-8mos)
I have been told mine will likely be in 1-2 months but even that seems far away right now.
I may opt for a private scan (to decrease the wait and decrease my anxiety) but I have been told by the ENT and GP that they don’t trust the reading of the brain scans in private practices.

For now I will wait and try the diet and then in two weeks I go back to see my GP… If the diet isn’t providing any relief she’s going to start me on migraine meds.
I mean what harm can it do to try to get relief in the meantime while waiting for the MRI results??

Thank you again.

6

Hi,

Don’t be scared. What you describe does not sound like MS since that usually begins with optical trouble like seeing a blacked out portion of your visual field.

What you describe sounds like MAV but not with a big bang to set it off, more like a small bang.

My own story is similar to yours. I had a busy day running around and playing in the park with my daughters, then went to bed that night and woke up at 4am to check my phone, and that is when the room started spinning. I think that I must have dislodged something, which is probably what you did too. I had an immediate MRI which ruled out MS, since that was my first worry too.

I think you should try some migraine meds. I ended up on Celexa which cured me about 95% – I still get dizzy at night when I close my eyes.

Don’t worry. Keep reading this forum. Remember that there is a logic to this. We’ve all been down the same road and pretty soon you will see the process that we all went through of ruling things out, narrowing it down, and getting treated. It will get better for you.

7

Hi Laura,
Please don’t be scared. What you describe sounds just like what I experienced, from not being able to eat (due to severe nausea), the tingling (and numbness) on the face, to the heavy feeling on one side of the body. Many GPs will tell you that these are symptoms of anxiety, but if you read around the forum you’ll see that these are common migraine symptoms. When I first got sick 4 years ago I was convinced I must be dying and was certain I had MS (my biggest tip is to not google your symptoms!), but I finally met a knowledgeable and empathetic neurologist who helped me. With the right lifestyle modifications and medications things can improve. You’ll find lots of support and information on this forum, so if you ever need a kind word or sympathetic ear, you’ll certainly find it here.

8

Hi Laura,
All your symptoms sound so familiar to what happened to me two years ago except mine began with some VRT exercises. It’s a shame you need to wait so long for the MRI but in the long run having all the tests to rule out other conditions is pretty standard as MAV is diagnosed by excluding all other possibilities. It’s good reason to find a Neurologist who understands MAV.
While waiting for your test results it would help to ask your doctor for valium (or another benzodiazepam) - I take Ativan when needed. It really helped to calm me down when I was at my worst and before I was prescribed the migraine preventative meds. Two GP’s were convinced I had Menieres but the ENT tests/MRI all came back clear. So many of us have had difficulty getting a diagnosis because, in general, the medical profession does not have the knowledge of MAV and how to treat it. Printing some of the info here & taking it to your doctor could help with his awareness of the meds that are available for treatment.
Barb

9

Hi, Laura,

I noticed your post. Many of us were dumbfounded when the MRI came back normal. For so long, I was certain there was a brain tumor somewhere that wasn’t being found. The advice others have given is good – preventive medication is the key.
Good luck on your tests and your treatment.

10

Hello Laura -

Don’t be fooled by your headaches not being “migraine strength” - MANY of us never thought we were migraineurs until the dizzy stuff started happening. My mother and I, for example, thought we were “sinus” headache sufferers. We were both wrong. We were rarely “disabled” by our headaches - just kept going about our activities most of the time, only occasionally had to lie down because of a really bad headache. Many people call the feeling in their head “pressure” and don’t realize that’s migraine. Many people have headache on both sides of their head and think that can’t be migraine beacause migraine “has to be” one-sided; again, wrong.

Once given a diagnosis of MAV, we’re told to get the MRI to rule out other possible causes for our symptoms. I’d bet well more than 99% of us get told the MRI is normal, so “yes, you have MAV.” Your symptoms are classic MAV, not classic MS or classic brain tumor.

It’s hard not to worry, but really, it sounds like you fit the pattern. Looking up and down when reading things used to set me off, too. I hope you can try to tell yourself that spending a lot of energy worrying about something that will probably not come to pass could cause you to lose a lot of precious time. You will worry some, but try not to worry the whole time you’re waiting - please try to spend some of that time considering the possibility that you DO have MAV, and try that on for size; live in THAT reality, instead of some of the scarier ones. It’s much more likely anyway. Take care.

11

Hi Laura, I am so sorry to read you post and see how you have been feeling. You can feel so alone and scared. Everyone’s feedback is great though. I don’t get migraine headaches (the typical that everyone expects.) I often get head pain or pressure but not enough to put me to bed. My main symptom is dizziness and imbalance issues. They think I have mav. Take heart in the fact that MAV is much more common than tumours or MS. It can all seem so frightening. I ordered the book ‘Heal Your Headache’ and it has been great. The diet hasn’t changed anything for me yet but just understanding how migraine is so much more than just pain and the impact it can have, helps to put you at ease a little. Keep us posted xx

12

Hi Laura,

I don’t think you have MS. I actually had the visual issues Longshort mentioned (optic neuritis) 10 years ago and two MRIs later and I still don’t have MS. Your symptoms definitely sound way more like migraine than MS.

Don’t get distracted by the headache thing. While most migraineurs do experience pain a significant minority (around 10%) experience little or no pain. I’m one of them.

Hang in there!

13

Hello

Please don’t be scared, Migraine/MAV produces some very strange and varied neurological symptoms from flashing lights in your field of vision to numb fingers and even stomach problems. Everything you described i have/have had so i feel sure that what you are suffering is migraine.
DON’T go googling because you will drive yourself crazy, i have been there and done that and it never does you any good and just makes the anxiety worse which in turn makes your symptoms worse.

MAV is a very scary debilitating condition and extremely difficult to live with, you have my complete sympathy. I am currently on maternity leave and have no idea how i will get back to work as my symptoms are quite extreme right now, i too only leave the house if i have to and do not choose to do much of anything socially.

I was also worried about the MRI before i had mine but remember that brain tumours are very rare (migraine conditions are very common) and the symptoms of a brain tumour would probably differ to what you describe, they would probably include confusion, seizures and severe headaches.

Try to tell yourself that this is ‘only’ migraine and you are not ill otherwise and although migraine is very very unpleasant when it presents like this it will not do you any longterm harm. Try to relax as much as possible and do things that take your mind off of worrying about it, maybe listen to your favourite music etc

Have you read Heal your Headche by David Buccholz? It is very informative on migraine and its associated symptoms and it gives you a lifestyle and diet plan to follow to help with your symptoms. The diet is quite hard to begin with but quite a few people have a big reduction in symptoms if they stick to it so it’s worth giving a go. I would highly recommend the book.

Wishing you all the best with the tests and the future, don’t give up, you will find improvement somehow :slight_smile:

14

Thanks for all the replies and encouragement.
I’m so sorry to hear you have all been suffering with this for so long.

Your comments have gone a long way to help settle down my anxiety about other possible causes for the feelings I’m having.

My one ongoing confusion is over the face tingling. I didn’t have it for the first couple of months and now I get it all the time. I’m not hyperventilating or having panic attacks when it happens. And it seems to go on and off throughout the day.
It’s particular points on my face that feel like little hairs are being dragged across them briefly. Mostly my nose and chin and cheekbone of the left side of my face. Really annoying and distracting when you’re just trying to relax and be calm!

Has anyone had this symptom during MAV?

Thank you again everyone. I really hope you all find ways to make your days easier because if I have MAV then I know how you feel and it’s not a good feeling. <3

15

I have had a lot of the symptoms you describe in the face. In addition, I get shooting pains in the chin, across the nose, etc. Sometimes I get symptoms on the left rather than the right side of my face. The reason this became important is that I had a misdiagnosis about six years ago as bilateral trigeminal neuralgia. If you read, Dr. Buckholz’ book, he talks about why this diagnosis is ludicrous. At any rate, I was given Trileptal, which was a band-aid. Five years later, the MAV started. I know when you hear facial pain, people always assume MS, but it can be a lot of different things. Be careful about any dental work. I think I had a root canal that I didn’t really need during that period.

16

I just wanted to say, Laura, you could be me! I am 31 now, live in Canada. This started about 2 years ago for me. I have had everything you have had a more. Even the face tingling and no I am not hyperventilating or having a panic attack. Mine is up and around my scalp of on one side of my mouth. For me the only thing that made this feel ok was time. My doctors put me through tons of tests also. I have optic nerve issues and l’hermittes signs daily which are symptoms of MS, but I do not have MS. I was tested for autoimmune and a bunch of stuff, lyme disease etc.
I guess as time passes, realizing it isnt anything that is going to kill you makes it easier…I know difficult! As my doctor says, sometimes we dont know what it is, but we can rule out what it isnt. If it was something really awful you would already be dead or we would know what it was. I am not sure if this will help you or not. Although I have come to accept this, it has changed my lifestyle and I feel much older than I should I believe. Get lots of sleep, eat healthy, cutting out all alcohol and try and stay away from too much wheat, it seemed to help me.
I am sorry you are going through this, but you are not alone! Try and appreciate the moments that you feel ok and be grateful for them

17

Laura, another one here who understands… I’ve had dizziness since the 1980s, and in 1999 got worse dizziness, my first ocular migraine (that’s how I discovered I was a migraineur!–though with no significant headaches), and that year I also got lots of paresthesias, including facial shocks and tingling on both sides. Around an eye, beside my mouth, etc.

Got MRIs and neuro exams and 13 years later it’s still not MS. The tingling and shocks (painless after the first go-round or two) are very rare now, but for years they kept returning.

Schoomzie: what intrigued me very much was that you also have Lhermitte’s. Now HOW do your doctors explain that? I have it too, on and off for the past 12 years. NO explanation whatsoever offered to me, not even theories on the Lhermitte’s. It is sure not a part of migraine! What is the Lhermitte’s like for you?

My MRIs are nonspecifically spotty and my brainstem evoked potentials are highly abnormal, but those could be explained by migraine (as I found out ON MY OWN–not from doctors!!). The Lhermitte’s has always remained the most puzzling and worrisome symptom.

Nancy