The Vestibular Migraine Community
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New here ... looking for reassurance


#1

Hey everyone new here
Wondering if anyone can help, I’ve been unwell for 8 months. However I am really questioning if Vm can cause all this .

I’m a 29 year old female trainer from london. I have had dizzy episodes ages 13/19/24 5 years apart with no symptoms inbetween. All of these times I purely had just off balance and rocking with some visual issues mostly the effect of things breathing if that makes sense . Things would appear never still and zoom in and out .

8 months ago I got a virus and then 3 weeks later my worst nightmare started. At first it was intense dizziness and then all these other new symptoms followed. In the beginning I could not leave my bed for months then it became housebound. These are my symptoms :

Intense dizziness / rocking
Visual snow 24/7 like a broken tv screen
Head pressure so bad my head feels like a pressure cooker
Intolerance to movement even people moving in front of me makes you brain hurt my eyes can’t keep up.
Light sensitive
Can’t focus my eyes / double vision
Neck pain
Odd visual symptoms , almost looks like looking through heat if I stare in to the distance
Tingling on my leg and arms
Being in a car my eyes can’t keep up and I get disorientated
Intolerance to visual stimuli especially walking outside
Derealisation 247 a feeling of being surreal ( my worst symptom )

I have been diagnosed with Vm and although I believe I had vm episodically as a kid . It never was that bad and life carried on. The last 8 months have been the worst of my entire life . 247 symptoms that never leave me . I have missed out on so much life and I am struggling to accept this diagnosis or see light at the end of the tunnel.

I have seen dr surentherin who I know is highly regard when it comes to mav he has me on nort and also proprananol . Currently on 60mg prop and 30mg nort . However I haven’t seen much of a change on these meds which male believing diagnosis even harder :frowning: I read so many people online are feeling sooo much better from either time or meds after 7 weeks I’m already on my 9th week of medication .

My question is has anyone been where I am and made it out the other side ? I can’t see the light at the end of the tunnel I turn 30 next month and can’t even celebrate it how can a migraine be this awful ? Any positives would be welcome and does this 100% sound like mav to you all? I have had balance testing all fine and ct scan/mri/ hormones check and routine blood tests.

Many thanks in advance amy xxxx


#2

Amy, welcome to the board - you sound like a classic MAV sufferer.

I’m a bit of a special case, seems I acquired mine from trauma, but had all the MAV symptoms … I’m just over 3 years in and my condition has improved tremendously. I was on Ami for about 1.5 years. I have to be careful with physical activity (basically straining) or my symptoms get worse again.

You are seeing a Doctor with a great reputation so settle into the treatment, I’m sure you will be fine :slight_smile:


#3

Thanks so much for the quick reply : ) I’m so sorry yours was caused from a head injury I have heard this is common. I know I am seeing the best possible I just wondered if I’m a special case that I haven’t responded to medication yet . I am so happy to hear you are doing better . I know ami is similar to nort could I ask did it take a while to feel better on this med ? Also did you by any chance get the spaced out feeling and visual issues these are by far my worst symptoms .

Thank you again for all your help it makes me feel far less alone ! X


#4

Amy you are not alone, and there are loads of Brits on here too.

There are a few that have struggled with finding the right med … sometimes you have to persevere.

You may have not found the right combo, or your dose isn’t at the optimal level yet … work with Dr S. to go through the medications in a controlled way.

I was really lucky … I had an immediate response to Ami (in 4 days I felt improved … and after upping to 20mg I was MUCH improved) … i still have symptoms, but they are not too bad now if i’m careful with activity.

Yes, feeling spaced out was what happened at the moment of onset - I was in a meeting at work (5 months after the initial trauma). I felt like I’d had a stroke or something … almost an out of body feeling.

Visual issues started a few months in … I had visual rocking, a feeling the floor was at a slant and intolerance to TV & computers etc. This was sorted out with Amitriptyline fairly quickly.


#5

Thanks so much , I know he is the best I guess I expected to take a pill and recover and when that didn’t happen I questioned what was wrong with me.

I’ve had that feeling Iran pretty scary amazing what the brain can do ! Wow that’s amazing that you had such a good response : ) did you stay at only 20mg for the whole year ?

I am upping to 40 soon so hoping this gives me more relief .

Thanks again for the help it’s really appreciated x


#6

I didn’t go up, mainly because I felt dizzier at 30mg … but if you don’t feel you have gone ‘over’ you might try going up. It didn’t eliminate my symptoms at 20mg but I did feel much much more normal …


#7

Hi

Sounds so typical MAV to me. Lots os symptoms, some more difficult to cope with than others. Visual issues are very typical with MAV. Remember the eyes are closely linked to the vestibular system and MAV’s a vestibular condition. I think I had ‘sick’ headaches as a young girl, possibly abdominal migraine, tremendous car sickness. If you think about it you may find a hormone connection if yours started at 13. My MAV proper started alot later episodically for more than a decade then, bang, hit 24/7. It’s unbelievable at the start to imagine migraine can be the cause. You think you are dying at the very least, if not something more serious! Yes, and like everybody these days we all expect to take a pill and recover. Unfortunately MAV isn’t like that, not at all. You are in the right hands. Dr S is the ‘bees knees’ in the UK. Wouldn’t imagine you’d find better in UK. Sure you’ve read about people who have got better in 8 weeks. I am sure many do. @turnitaround started to improve after 4 days on meds, I didn’t see any improvements for months, maybe you won’t either I’m afraid. As @turnitaround said you may not have yet reached the right dose or found the right med or med combination. In an online newspaper article I read after a study of patients seeing Dr S the team there concluded patients were often 70% better after 9 months from initial visit. I’d subscribe to that one, not that I have ever seen Dr S but although I saw improvements before it was about 9 months after reaching an effective dose that I started to see significant improvements so, hard as it seems, try to be patient, accept it might take a while and try not to stress about what you can’t do cos being stressed won’t help you conquer MAV. Try to concentrate on what you can do and stay positive, and as active as possible whilst you wait.


#8

Thanks so much , maybe 30 will be my magic number :pray:t3:


#9

Hi Amy,
Good to see you here :smile:

(well, I say ‘good’, obviously I wish neither of us needed to be) x


#10

Thank you so much onandon03 this has really been comforting mostly because I thought no way can migraine be episodic and all of a sudden bam it’s 24/7 and life changing so that’s defibatley made me feel more normal . Yes it makes sense that the eyes don’t behave with a balance problem . When I was younger it was just mild off balance it’s only now I get pressure cooker head and all the other symptoms so strange how migraine changes hopefully it will change back to just that :grimacing:. Mine are defiantly hormone triggered I was doing bodybuilding competitions I never took anything but my periods stopped for months and I messed my hormones up dr s thinks this may be why it’s come on so strong , if only I knew back then what I was in for ! I hadn’t actually read that so thank you that does make me feel ALoT better dr s said you have to have patience he really gets this illness . I really appreciate you taking the time to to tell me your story and I will hopefully try to just take it day by day with the medication. Only thing I can’t do is run or jump as it triggers me but I can still go on my bike and lots of walking even tho it’s painful for my brain :slight_smile: x


#11

Thank Kathleen :slight_smile: clearly this is the place to be :roll_eyes:


#12

Welcome Amy. I always thought I came down with this crap because I did not exercise enough or take good care of myself. After learning that even fit people get it, I don’t blame myself as much. Never the less i am truly Sorry to see you here, you will feel better once you find the right med and right dose. Nort + prop is a great combo.

I am on effexor + Ami.


#13

Thanks so much , and trust me I assure you that’s not the case . I had dizzy spells as a kid and thought being fit would help in the future apparently I was wrong :roll_eyes:

Can I ask did you also experience a lot of my symptoms ? Really am having a hard time believing all this is migraine . As for the meds I truly hope so :slight_smile: how are you feeling these days on your combo? Dr s did say it takes time so I guess that’s reassuring


#14

Hi again.

And I thought I’d convinced you. Migraine is/can be much more than a headache. Migraine affects the functioning in the brain so surely it’s not surprising its effects can be felt throughout the body.

If you read around this forum you’ll find lots of theories about what else might be causing yr symptoms. One hypothesis is it’s migraine, another it could be Hydrops. There are others. I think sometimes MAV is used as a collective noun to cover symptoms produced by a variety of conditions all of which affect the vestibular system. Generally the treatments are much a case of trial and error but are very similar irrespective of diagnosis so it’s not that important in moving towards an improvement. Very interesting topic for debate though. However, psychologically, you must find a diagnosis that is meaningful to you, and that you can believe in. That, and not stressing about the why’s and wherefores, will help you alot. Don’t beat yrself up yr training causing this. Who knows. May be it was going to happen anyway. If you look under Womens Business you’ll find distinct patterns that lead one to believe hormones play a huge role in MAV for some. Read some ofthe Success Stories. Try @DDAM1994 most recent couple of posts. He takes Noritriptyline which is similar to Amitriptyline. Look for info written by Dr Surethiran and Dr Silver. That way you’ll get to understand MAV a bit more. Sometimes that helps. And try not to stress. Accept it’s going to be around a while and try to work with it. Good you can still bike and walk. That’s great. Do it lots but stay safe.


#15

I remember once saying to an audiologist I just wished the dizziness would go away, I just want to be normal. She gave me a very stern look and said ‘Oh. You are perfectly ‘normal’, you are just a normal person with an injury. Could have been a broken leg. It’s just not so obvious. It’s not for ever’.


#16

Onandon03

People like you make me so glad I joined this forum. Everything you say makes sense. And I personaly have no problem accepting MAV as my diagnosis as I had them when I was younger then a HUGE one 6 months before MAV kicked in and have never been the same since. And i feel loads better reading your quote " its not forever" even though im struggling

Keep well all

Jo xxx


#17

Thank you. Kind of you to say so. I think acceptance is a big step in the right direction. A diagnosis that makes sense to you is good to have. Sorry to hear you are struggling. What meds are you taking to help.


#18

Hi Amy,

So sorry you are dealing with this awfulness. I have VERY similar symptoms to you and have been diagnosed with vestibular migraines. It came on 1 week after I was sick with a flu (I’ve always had migraines but the headache kind). Migraines can change and present themselves differently as you get older. My neurologist told me it is very common that they shift as you get older, which is so unfortunate but true. I guess it gives us hope that maybe they will lessen or change at some point. As others stated above, hormones changes can cause this and what have you.

I have the visual snow, eye floaters, and objects “breathing” just like you, and things slowly move/rock. I have trouble holding conversations and can’t look at people to my left or right to talk. The derealization was a huge one for me - it was constant and really freaked me out. Just breathe, know that something will help you with it (whether it is medication or therapy). I try and get out and walk as much as I can and take someone with me if I’m feeling really bad. Every step sometimes is a struggle, I think this group as a whole on this forum takes life a step at a time with these migraines.

It is difficult to accept the diagnosis, but accepting it is a big step. It sucks, there is no two ways about it. It is an isolating and internal struggle as it can be so difficult to explain to others what you’re going through. I too have missed out on life for the past 7 months or so. A support system is huge to have, whether it be your family or friends. I moved back home to live with my mom for the time being. Something that has helped me is that I’ve stopped asking myself why and looking back on what possibly could have caused this - I drove myself crazy asking why why me, instead of focusing on things that would help me get better. I go to physical therapy at a place that deals with individuals who have all sorts of brain trauma/stroke/other injuries and having that perspective sometimes helps me realize that this truly could be a lot worse.

The trialing of medications will be tough. I started on Notriptyline, then effexor, then topomax and none worked for me. That is NOT to say nothing will work for you. You will find something that works. I am also starting vestibular physical therapy this week to see where it can help. My therapist has vestibular migraines as well. Remember you are NOT alone in this struggle and you will find something. The first ENT I saw who specialized in vertigo and balance prescribed me 2 mg of valium (very low doses but effective). This is about the only thing that helps me when I have bad dizziness episodes. I am not sure if your neurologist will prescribe it for you, but it is really the only thing that has helped me and is a “rescue” drug. If anything, it has given me temporary relief from the worst times and knowing that i have that on hand is also a mental thing for me.

You can do this. Know that there are others going through this and live happy/active/full lives.


#19

Hi Helen

The meds i have tried and failed since Nov 2014 either due to adverse effects or simply dont work for me are

Topiramate(twice)
Pizotifen
Candersartan
Flunazirine
Nortriptyline
Oxcarbazepine
VRT
Acupuncture

Now Botox has been chucked in the mix with 2 more meds left on my specialists list being Ami & Duloxetine.

It may be worth a shot adding one of these if i dont improve

Take care

Jo xx


#20

Hi Jo

Well, that’s quite a list. Noticed there was no Propranolol then checked out yr previous and looks like you did try that too. Long list like that, easy to miss one. It’s a bit soul destroying not to have found the one you need yet. Maybe Ami will be The One for you. Or the Botox.