The Vestibular Migraine Community

Newly Diagnosed


#1

Hi

I’ve been suffering with balance issues for nearly 8 months now and was finally diagnosed by a good ENT with Vestibular Migraine a few days ago. It hasn’t been confirmed by my Nuerologist but after a few days of reading online it certainly sounds similar.I thought I’d see what people thought about my symptoms here.

Late last year i came off cymbalta after ten years and moved to Pristiq(basically Effexor) to combat anxiety and moved up to a dose of 250mg when one night i was hit with a massive wave of nausea. Coming off the pristiq made the nausea go away but i was stuck with a sense of feeling off balance and leaning to the left 24/7. I then tried Paxil and found any dose above the minimum made the nausea come back and my sense of balance and leaning left feel worse, and this has continued to this day on every tablet i’ve tried. I’ve even tried no tablets at all for a few weeks, and after initially feeling better began to feel worse. Interestingly Nortriptyline was the tablet i found most tolerable and the only one i could stay consistently on, but still at very low doses- 10-20mg.

Initially i didn’t feel like i had vertigo or any eye problems but in the last few months i’ve found myself having worse headaches and my eyes are definitely not normal. I use to be able to use the computer and read much easier but have found it harder lately. I get a slight sense of things moving, like the road when stopped in the car, objects if i stare, and a general sense of swaying like being on a ship. I’ve had the hearing test where they use hot and cold to induce vertigo and the only time i truly feel close to that bad is with my eyes shut. My eyes seem to roll around trying to orient me. I notice this especially when walking. If i look up and my eyes cannot see the ground the feeling of off balance and nausea instantly increases.

I’m only 28 and this has all been pretty devastating to me but my ENT was adamant that it is treatable and I just need to find the right balance of tablets and maybe do some VRT after.


#2

it is definitely treatable, you can get better. i have improved from “absolutely awful” to “moderately not quite right” in a few weeks on Pizotifen. i am hoping to get better still, and maybe one day put all this behind me.

so - be optimistic. it’s great you have a diagnosis. the road to recovery might have some bumps on the way, but you should find yourself travelling in the right direction.

some meds seem to work for some people and not others, so it does seem to be a bit of trial and error. but keep trying!

good luck.


#3

Thanks for the reply. I suppose the biggest thing i find disheartening is that im actually worse after 8 months not better in anyway, and the fact that so many of the success stories here are from medication, when medication almost seems like a trigger for worse symptoms for me. My heart goes out to the people here who have it worse than me. The 24/7 grind of the symptoms is the most emotionally brutal thing i’ve ever endured and i seem far from the worst off.


#4

Matt, if it’s any help I got worse for about a year, relapsed over and over badly for another 6 months, then started to improve. 2 years in and I’m not better but well enough to cope without meds (although it’s tempting to go back on some days :slight_smile: )

Hang in there, the beast eventually stops roaring and simply growels a bit.

I agree with you it’s one of the toughest things to get through and affects almost every aspect of your life.

And if the symptoms weren’t bad enough, the lack of answers and vagueness of the explanation of what you are going through (which never made sense to me) certainly doesn’t help.


#5

Very familiar. Here Is my story and how I diagnosed myself. I originally started with neck and shoulder pain. I then suffered vertigo, disequillibrium, & oscillopsia (images jump)for over 20 yrs intermittently and 24/7 last 4 years. I was 39yrs old when I had the first attack. It took me 24 year’s to figure out that sounds created my symptoms. I have been through many experts in Canada and USA for a diagnosis and most of the experts couldn’t get to a diagnosis. Some of them even prescribed me antidepressants. They tried every antihistamines, neuroleptics and many other drugs to help me. All these just only ruined my liver and kidney. I had every diagnostic text in an ENT book other than exploratory surgery. Being a master’s prepared nurse I refused to accept that diagnosis. I lost my nursing license as I couldn’t go back to work. I then started keeping a very descriptive diary, hour to hour and figured out that it was always certain activities that is producing my symptoms. As a last resort, after a lot of research I started using Silicone ear plugs fo a week (remember it is important to plug only one ear 24/7 at a time for a week so that you can hear and at the same time figure out the problem ear) and I realized that it is low frequency sounds that was giving me the symptoms. Any motorized sounds produced the symptoms, even the sound of a running water, meals (especially the food that makes the sound when you chew, exhaust fans, AC/heater, cars, TV, music etc. I was told I have a supersonic hearing and I was so loud. Hope all of you can give it a try with Silicone plugs and see if it makes any difference. This problem is called Tulio phenomenon. It is caused by either SSCD, perilymph fistula or from a thin bone beside the ear. If it is SSCD you can patch it. For other situations, we don’t have much options other than avoiding the sound entry into that ear. If we do surgery we lose 30 to 40 % of our hearing in that ear. We can have custom made ear silicone ear plugs which causes only 30 to 40 % of hearing loss. If you plan to use it, just only seal the entrance of that ear you plan to block. Please don’t push it into the ear drum. Make sure you air the ear when you are not exposed to the sound (I mean pindrop silence). Now, I only get the symptoms if I am exposed to sounds and I forgot to wear my custom made silicone ear plug. Now I watch TV, drive and is able to go back to my normal routine. Please remember, this is not a medical advice. These suggestions are only for people who had proper testing and treatments before trying this out and only if your treatment is not working. Could you all please let me know through my email (please write “VERTIGO” in subject line so that it doesn’t end up in trash/spam)below if the Silicone plug worked for you as I would like to join a neurotology group to further the research on Vertigo/disequillibrium and ocillopsia. If you have any questions, you can email me at gracymathew.kalath@gmail.com. There are too many of you struggling with this illness on Facebook and I can’t keep up with the Facebook comments. So please email me if you have any questions. If you get my story more than once that doesn’t mean I am trying to sell Silicone plug or send you spam. I trying to help as many vertigo sufferers as I can as I can’t keep up with the names. Good luck!

Thank you
Sincerely,
Gracy


#6

Hi I think I have mav and i am terrified as i have a 14 month old baby and i have spent five months of his life in bed I can’t leave the house .i can’t even mind my son or read him a book . Have neurgolist appointment on Tuesday and am worried they can’t help


#7

Dizzylizzy, don’t panic! The regimes are pretty good and most people find it reduces symptoms significantly to the point where you can get your life back. They may start you on something like Amitriptyline or Propranolol. There are various options depending on how you get on with them. Also consider the diet - avoiding the 6Cs. That can help loads too! Be patient, it may take some time to get back on your feet, but back on your feet you will be!!

James


#8

Hi thank you so much ! I think I have been googling to much and have myself worked up that I won’t be able to take care of my son feel like I am missing out so much on his baby years .


#9

Yes we want and need to know what is going on, that’s natural, but googling can bring on a lot of anxiety. Try to pace it a bit and take a break from Mr. Google if it gets too much.


#10

Hi thank you for message so dizzy these day i can’t even have a conversation with some one . Quick question what are the 6c food groups


#11

No Coffee, Chocolate (yeah, I know!), Chianti (Red wine but alcohol in general), Cows milk, Cheese, Chinese (MSG largely, home cooked probably non issue)

Also don’t eat Advocados or Bananas if you can.

I suspect it’s about reducing Potassium as all above are high in Potassium.

I don’t believe you should combine this diet with a diuretic as you tend to lose lots of Potassium by taking that kind of drug.


What meds compliment Amitriptyline?
#12

So went neurgolist waited two hours for him to tell me my balance problem is from a virsus I must of got in my ear that is why eyes flicker even dough ent said my ears are fine .he does not know why I am having spinning senesations 24/7 and my headaches are tension headache! Dont know how I feel about it five months waiting for help and get told anxiety causing IT . But at least I am getting treated on vitamins b2 managsuim fish oils and he have me cerc which I have used loads of times and never worked to slowly come off Prozac take 25 of prothiaden instead and on naprosyn for two weeks I haven given up choclate and dairy so hoping it all helps


#13

Hmmmm … nah don’t buy it.

Focus on symptom management Lizzy! See what works for you! Spinning should eventually calm down. Has done for me mostly.


#14

Yep that is what i was thinking . So I am going to try diet and hopefully it will help. Plus new tablets he gave me are used to help treat headaches so they should help with the headaches I hope. And if headache goes hopefully brain will re train .but if anyone has any other advice I would be very grateful !


#15

Yes do the diet. Though until things calm down its hard to see the difference. I tried the diet a while back and gave up because my symptoms were so severe it was really impossible to tell if it was doing anything. Now I’m experimenting off meds it’s much clearer. In any case is definitely worth a go!


#16

I saw neurologist today and he confirmed it’s vestibular migraine. Unfortunately ended before I got my list of questions answered lol. Nuerologists seem to be the type to avoid questions rather than speculate. Frustrating

My biggest worry is if the visual movement/vertigo will be permanent or resolve with the migraine as it seems most of my problems stem from my rocking vision.


#17

We hardly know anything about the etiology of vestibular migraine. Interpret the name with a pinch of salt.

I’m 2 years in and my visual symptoms don’t bother me very much at all. Amitriptyline sorted the rocking visuals almost immediately. I’m off meds at present and eyes are pretty good. I suspect the brain has part compensated and the condition has improved a bit.

Are you up to dose yet?


#18

Yes i was taken aback when one of the best neurologists in Australia said they understood little about the relationship between migraine visual snow, tinnitus and the actual underlying condition.

That’s good to hear about vision, I’m glad you are doing well. I often wonder about the actual trigger for it all. Interstingly the first time I got ear pressure was recently which coincided with worse visual vertigo.

I started 20mg nortriptyline today and already feel slightly better


#19

That’s excellent. It can be a rough ride but don’t let any dips discourage you. One always climbs back up and improves.


#20

Ugh I’ve hit a low point. I seem to be getting worse and worse lately, despite nortriptyline helping rocking slightly already. Even 2 months ago I could take hour long walks, use the computer and had zero visual problems. Now I get constant swaying vision slightly like I’m on a boat, haven’t been able to take walks very often and can’t even watch TV or use computer to pass the time due to the brightness.

I know the odds are I’ll get better and I’ve only just started nortriptyline but boy is it hard to feel like you will get better when you keep getting worse.