Hi new here and wanted to share in hopes of getting some answers to some questions

Hi everyone…my name is Mary. My situation started with a violent attack upon waking one morning. I went to get up and I felt like I was being tossed around on a rocking ship violently. I began to vomit, shake and sweat. I was terrified that I was having a stroke or heart failure. My husband was home thankfully and called an ambulance. Hospital checked everything cat scan, blood and only my thyroid was elevated I have a history of already. Long story my symptoms changed over the next few weeks I began to have extreme pressure in my head, my right side of my face went numb and tingly, my ears felt pressured and tinnitus in my left ear was terrible. My balance was terrible, brain fog, I couldn’t tolerate my husband talking beside me, eventually tinnitus in both ears and the sounds began to change. My brain is not working properly. Things I used to do automatically I can’t do anymore without great thought :frowning: I can’t drive, or work…so depressed!!! I’ve had 3 different diagnoses vertigo, menieres, labrythitis and then I posted a thank you to my sister on facebook for sending flowers and my cousin asked what was up. I explained the situation and apparently her brother had something similar happen. He lives in Boston and I live in Ontario Canada. I call him and sure enough he was diagnosed with Miagraine associated vertigo. I went to my family doctor and he has never heard of it. Imagine that??? but he was willing to start me on Topiramate which is what my cousin has had success with and referred me to a neurologist May 5th. I am currently up to 100 mg 50mg morning and night, tolerated pretty well but so exhausted and definitely causes more brain fog. My question is for those who have had success on Topiramate…how long before your body finally adjusted to the side effects? Did you eventually not have the extreme exhaustion and less brain fog? At what point did you finally feel like you could finally get on with your normal daily activities? I am 5 weeks off work and no driving and going crazy. I don’t see an end in sight yet. Is there a specific dosage that is the most successful to reach for this condition. My current job is teaching children with autism in kindergarten. It’s an early learning program through play with up to 30 children playing all day long. The thought of going back to that environment is scaring me half to death. I don’t know if I will be able to do that again and it’s breaking my heart. I just finally got a contract position and I feel like I will be disappointing my husband if I can’t do it. Thankfully I have just recently started a side business painted wood signs and doing workshops. I think I could manage that with an assistant. Everything happens for a reason and I don’t want to become completely devastated over this, so I’m trying to look at the bright side. I know my husband just wants me well and will support whatever is going to make me better again. Sorry for rambling and thank you for all your support. Reading through this group has been so helpful.

Hello sweatheartsok. I am sorry you have had to find us but hopefully you will find some answers here.

I am taking topiramate but at a very small dose, 12.5mg am and 12.5mg pm with 10mg of nortriptyline. I found that was enough for me. Stopped all the spinning, nausea and other horrid symptoms and the only side effect is increased ear fullness on occasions but I can live with that. I was asked to go up to 50mg but as I explained to the doctor I really didn’t need to as I felt so much better on 25. He was happy with that and told me I can always increase it if I feel I need to at any time in the future. I am not fatigued, in fact I was much much worse before I started meds, so maybe less would work better for you too? It is all trial and error. Less really is better sometimes but only you will know what works and what doesn’t. Just don’t be afraid to experiment because you can always change it again. I hope that helps.

Welcome to our little band of warrior, Sweerhertsok, and I hope you find some answers here, - and at the very least enjoy the company of people who ‘get it’!
Just remember that your health is more important than a prestigious job…maybe the universe is telling you to take things a bit slower. I hope you soon get your meds tailored to your personal needs and feel better.

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Thank you for your response…I will definitely keep this in mind when I go to see the neurologist :slight_smile: Happy you were able to find something that works well for you!!!

Thank you…I definitely did take that as a message out of this, and I’m doing a lot of soul searching. I’m 49 years old so I better take this seriously now before it becomes something more serious.

Did you get any pins and needles waking from sleep - i tend to ramble on about this a bit (please forgive me guys) but have a rare symptom of MAV - vertigo sleep shock. My body gets pins and needles all over with nausea and takes a while for my normal functions to resume…ive even had migraine pains in my head wake me up from a deep sleep. Propranalol has supressed most of these nightime attacks and most of the earthquake vertigo I was getting at work. I still get back of the head pain/blurry vision and brain fog but can live with that, Any tiredness is your brain working overtime with large areas to try to keep you balanced. …paul.

I’ve had the brain fog ONCE in the two years Ive had this and that was enough. Lol. Horrid and slightly scary the first time it happens until you realise what it is.

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So the brain fog is not something everyone who has MAV gets? I almost worry that it will be permanent, that my brain has been damaged some how by the severity of the attack and how long my symptoms went on without any treatment (3 weeks) I had tremendous pressure in my head. I felt like I was in an altered universe. Very scary!!! I don’t even remember the first week much at all. I wish I could find someone who experienced something similar.

No I have not experienced any pins and needles but I did have the feeling of pins and need;es on the side of my face and top of my head right side ongoing for some time prior to the attack …good for you for rambling. It’s important to keep asking to find others who have had similar experiences. I’d like to find others who have had similar experiences to mine as well. Were you able to go back to work? I wondered if the fatigued had to do with my brain having to work so hard. The blurry vision was going on even before my attack which was really concerning me especially driving. My biggest concern is if I will be able to go back to my current job. I have short term disability for now. What will happen from here? I’m only 5 weeks in

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I got major brain fog before topiramate! It happened many, many times whilst doing things I had been doing automatically for years, I suddenly could not remember how to do them. It was very frightening. Once I got the meds sorted the brain fog got under control and happens very infrequently. It did happen at the till in a supermarket last week when I couldn’t remember my pin number so I had to rely on automatic pilot and hope my fingers knew what to do! They did thank goodness because that would have been embarrassing for sure. That felt like a huge leap of faith but it worked so maybe I won’t panic so much next time.

Oh and the blurry vision goes along with the condition which is also helped by the correct meds. It is very uncomfortable and annoying but it will improve too. I am sure once your meds are sorted you will be able to go back to work, probably part time at first because it takes a while for your body to recover. We have to learn such patience with this disease.

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Im back at work and operating around 95 per cent of normal - which is good compared to some of the poor people on here who can barely get out of bed with it. Mine seems to be more neck and back related rather tham ear trouble so im not plagued with the vomiting and constant vertigo which most are troubled with. My ‘cup’ is overflowing though and im getting all of the usual MAV problems…so something is sending my cerebellum into the red zone. The longest I have been off work is a month I think - so it hasnt been a 24/7 issue for me - think the long term sick guys need to chime in on how you cope and where this would go next if work is not an option…paul.

I was signed off sick for a whole year and had to take early retirement because I only got a diagnosis and treatment after 11 years which is why I am in a good position to say about the importance of meds. If they had been available to me at the beginning I would still be at work because I loved my job and was so so sad to have to give it up.

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my symptoms 5years ago were 24/7 constant off balance,dizzy head,brainfog,pins and needles in left arm and some kind of pain in my arm too,neck pain,face pain,headache now and then,nausea,weird vision,bouncy vision!

Thanks for responding…helps to hear that others have similar symptoms. I also have the bouncy vision, almost like my eyes jiggle. I think I may ask to see the neurologist that specializes with the eyes as well. My eyes seem to be terribly affected I find. I would like to get them back to normal if possible :frowning: So thankful to have this group. What a blessing!

So sorry to hear that the medication wasn’t available to you early on. I am starting to feel like my family doctor has failed me as well. I’ve had many symptoms that should have been taken more seriously a couple years ago but weren’t. Just goes to show you that we really need to be our own doctors these days. I’m thankful to have found this group. Thanks for your support!!

Happy you have been able to recover fairly well. Thanks for your support!!

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Hello Mary;

I can sympathize with you in a lot of ways. I have had vestibular migraines for going on 3 years. They were under control and I was able to drive and work normal on meds. May of 2016 I came back from Mexico and have not been the same since. I cant drive and working is still there but bad sometimes. I feel as I have to pop lots of pills to get the day done and also taking every vitamin I can. I gave up wine per my doctor and also gave up coffee and been drinking a lot of green tea. Nothing seems to work anymore. I had to stop my gym membership I do Yoga at home. I completed my degree in December of 2015 in Sociology and still cant pursue my job I went to school for. I have a Neurologist in town and one at a big University hospital I have started to see a few months ago. I’m ay the point on injections in my neck the next time I go. I’m on Amitriptyline at night 50mg and on Verapamil ER in am and all my vitamins plus my high blood pressure pill. I was on Topamax and that was ok. I have dizziness all day always with or without a headache. All I do anymore on my day off is sit on the couch. I have anxiety about being left alone because I have blacked out twice with my episodes. Been ambulanced once and once with my hubby that was the very first 3 years ago. I can not think well on all these meds. My job I’m at now I have been here 15 years and the girls I work with have been great. They take me home and or drop me off at my hubby’s job. I have depression because of it I see what you are saying. I cant get out of this bad episode for almost a year now. This chat group helps me a lot and I follow a migraine group on Instagram. I do all natural anything and I’m an vegetarian. No one can figure out how to get me back to driving and the dizziness to stop.

Jocelyn, just one quick suggestion: could you try a herbal tea not green tea: there is still a significant amount of caffeine in green tea. I drink Redbush or Ginger tea and don’t miss caffeine much. Might help reduce the head rumbles slightly? Then again there have been months when I’ve drunk 2 coffees a day without huge troubles. I relate to all you have said. Sounds like you have a lot of support though so not too bad. I’m sure you’ll eventually get some remission. Keep the faith.

How did it all begin for you btw? Do you get vertigo attacks?


I have vertigo a lot. I have attacks, some are small and some are big. The last big one was at work and I had a huge migraine that day and i turned my head and I blacked out. Next thing I remember they called the ambulance. I don’t wake up fast. That was January 2016.

Yeah, same, but great to hear your last big one was over a year ago!