Hi everyone,
Iām new to this forum. I really need advice because my life feels like a mess at this point. Long story short, I traveled to Asia 3 months ago and out of the blue felt this feeling of wooziness, spaceyness, jello legs, motion sick. I also felt like fast moving objects bamboozled me. During the day time my vision is weird almost like Iāve been day drinking. It disappeared the next day and I was ok. Then it came back once I got back to the states. I got every test done possible, and finally saw two docs. One was a regular neurologist and the other was a functional neurologist. Both ruled out vestibular neuritis but both stated I may have something migraineous, as Iām slightly sensitive to light as well. I do seem to have episodes of this (head pressure) but the spaced out feeling is constant and always there. It messes with my cognition, making it hard for me to multitask. To make my life harder, I got into PA graduate school this fall and I have no idea how Iāll get through it like this. I canāt quit because itās my future but Iām scared. So deeply scared. my life changed so horribly and I donāt know what to do.
Got prescribed Verapamil to see if it helps and I previously used Nortriypline (only for two daysā¦I was extremely fatigued so I freaked out and quit it)
I really need suggestions on what to do. I contacted the disabilities office for school as wellā¦
Hi and welcome. Sorry to hear your circumstances. Can I suggest you read Danielās Success Story on here under Success Stories and Positivity which might give you some general idea what you are dealing with having developed MAV. Then plough through the āFAQ ā answered by various neurologists on our Wiki section and then have a good read around the subject to thoroughly understand it. It will not seem so scary once you grasp the concepts involved. Itās nothing mystical or magical. Just a condition people experience and have to deal with in order to get some quality of life back. Any questions you will find plenty of practical experience and support amongst the various regular posters on here and a wealth of info if you use the Search facility. Then fire any questions.
Best perhaps to do some of that reading before or at least in light of the following comments which will otherwise sound rather harsh maybe.
Thatās common MAV symptom. Head pressure and the cognition, brain fog, symptom. In your circumstances donāt be persuaded to try Topamax any time soon. Not with studying.
Verapamil is used to treat MAV but be warned itās not likely to work very speedily. You are looking at a minimum of a couple of months. Few preventatives start to much less than that.
All preventatives have side effects. Fatigue is common. MAVers are notoriously meds sensitive so you need to introduce drugs low and slow. Start at 5mg and spread it over weeks to reduce side effects. Often the enhanced sensitivity means MAVers have to set time aside and work through the side effects which may subside in a couple of weeks. Youāll need to stick with it, not quit it. Starting at lower dose will help. Good Luck. Helen
I totally relate to what your saying , I feel spaced out 247 itās like looking st my life through a piece of glass does that make sense ?
I have vestibular migraine and most doctors have said this symptoms is caused by our balance signals being messed up and once a medication or time calms down the brain it should settle. It can take a while to find a med that helps but this group is so helpful and just know your not alone
i got this in early 2017, hit by the MAV bus, then spent a year slowly getting better bit by bit, and the last year inching up - and recently i have been without symptoms at all for the last 4 weeks, so iām happy to be where I am
2 years will sound a lot to you if you just got diagnosed. i had never been ill for more than 5 days before i got this. everybodyās different. some get better quickly, some slowly. a lot of it may be luck in trying meds and finding ones that work for you.
first things first: it wonāt kill you. but it can feel really weird and hard to explain to others. people can understand if you tell them you get migraine every day, but they donāt understand if you say you are dizzy - so i just told everybody i had migraine every day and it made me dizzy, and people seemed to be able to process that. people - including me. i find it easier to understand if i thing about it as migraine attacks with weird symptoms, rather than worrying what the symptoms are.
how is your school about this? are they able to offer you support? when i first got this there were quite a few long months when i could do barely any work at all - i couldnāt look at a computer screen. i was making phone calls in the dark but the buzzing tinnitus made it hard to hear what people were saying. but somehow - you get through. this year iām back snowboarding, mountain biking, driving across europe, playing sports. it takes time but you can get better. just try not to be freaked out about it - itās just stupid weird migraine symptoms and you can find ways to cope.
I guess Iām struggling with accepting my diagnosis. I feel head pressure almost like my brain is inflamed and spaced out. Canāt even multitask efficiently
I donāt know if thatās truly MAV? I donāt have balance problems, or visual snow, or vertigo. Just this weird sensationā¦but maybe it is.
I just started Verapamil this morning and it dropped my blood pressure so Iām a tad bit anxious about that.
Iām happy you donāt have symptoms must feel amazing! What have you done to fix your symptoms??
Hi Amy,
Do you have balance problems? I personally donāt so Iām having a hard time accepting my diagnosisā¦donāt have visual snow or anything like that. Just this weird spaced out feeling and head pressure. Iām so over it right now. Been crying almost everyday because it feels like my life is over.
And it feels like my vision is distorted. Things are too high definition. Itās really annoying
Thank you for this. I started my Verapamil today and I do feel quite exhausted but I typically have lower blood pressure. Iām now 105/70 which is quite low. But I hope it helps. I may try notrypline but Iām not sure.
I think Iām just having a hard time accepting my diagnosis. Never had migraines in my life. My family doesnāt eitherā¦it just hit me one day where I felt disoriented and out of it. It started off with on and off episodes where Iād feel it for an hour and it would go away completely. Then one day the sensation stayed permanentlyā¦
This has been my explanation to others since Nov 2014ā¦only my partner knows its not quite the whole package but its the only way others understand our illness
Joā¤
I do get the balance aspect but have spoken to a few who donāt and just get the head stuff . I know itās hard to accept diagnosis the best way I try to look at it is Vn / Vm / pppd all similar symptoms and treatment is super similar so whatever it is medication will most likely be whatās going to help.
I know how it feels so cry everyday and I promise you that will pass ur life isnāt over but it will take some time and perseverance to get back to where u want to be pm anytime x
Thatās true thank you for being so supportive Have you found anything to help you medication wise? In between my eyes feel so uncomfortable today almost fuzzy numb feeling and I feel like my vision is so high def that my perception is super off. Things look the same but arenāt? Do you feel that way? Things are too clear almost like my eye glass prescription is too strong
Iām not a doctor but would seem odd to prescribe Verapamil To someone with this sort of a reading.
You do need a meaningful diagnosis you can believe in with which to work. MAV can certainly start as you describe however I thought yours started following travel? Have the medics ruled out MdDs? Hard to accept you have āmigraine associated vertigoā with positively no migraine involvement anywhere. The light sensitivity is common with migraineurs but not elusively so. People with Menieres and other vestibular disorders get it too.
This many will say is āmigraineā particularly the head pressure bit. Symptoms vary individual to individual and diagnosis by symptoms isnāt reliable because the sufferer may not have developed some symptoms as yet, indeed may never do so. I was diagnosed as āprobableā MAV initially. Iām convinced if Iād had visual aura when I saw the consultant heād have said ādefiniteā MAV. Iād had it for 12 years before I saw him and no aura. Had first one two weeks after Iād seen him. So one cannot say āitās not MAV because I donāt get XYZā unfortunately.
Sorry, āmotion sicknessā is a strong indication of balance issues. I understand you are young and you donāt experience any practical problems with your balance but your symptoms do indicate some underlying issue. Maybe very minor and wonāt cause you any trouble at all. Youāre young and strong and normally active and with the correct meds Iām sure youāll get it under control in due course. Meanwhile donāt let Anxiety get the better of you. Youāll live! Helen
I see that makes sense. I also get this weird vibration feeling in my head when I speak with people or just trying to focus on their face. It causes a horrible rumbling sensation in my head. Almost makes me feel unstable. Idk if itās because of all the movement but I have to get away. Have you ever heard of this?
And it started with travel, the episodes started right after my plane ride maybe 2 hours after. I put my contacts in randomly and felt disoriented. Then it went away. It happened again the next day and the next until the sensation stayed with me. Is this still MdDS? I thought that was more of a rocking sensation. I may see one more neurologist for a 3rd opinion. Iām just stuck here because I feel so uncomfortable 24/7. I feel worst communicating with ppl because I feel like my head is gonna vibrate off my head.
Common MAV stuff. Read @turnitaroundās recent thread āMeetings and nodding in agreementā or ask @jojo65! VRT told me to āexpect anything to happenā and she was just about right! As @gidlabu said itās all just weird MAV symptoms. Itās possible to work out the mechanics of much of it not that it necessarily helps stopping it though sometimes it does,
No idea. Youād need a consultant to answer that one. Itās just that, with medical bits, I just donāt buy coincidences and also the nearer you can get to a valid diagnosis the better your chances in the recovery stakes. Although many vestibular conditions have similar symptoms, treatment options do vary. Did you make explicitly clear to the medics you saw the timing of onset? Might be good idea to do so. Their best chance of accurate diagnosis lies in an exact and detailed history taking. Thereās no definite blood test or similar for any of these conditions. Helen
my life changed so horribly and I donāt know what to do.
Have you found anything to help you medication wise? In between my eyes feel so uncomfortable today almost fuzzy numb feeling and I feel like my vision is so high def that my perception is super off. Things look the same but arenāt? Do you feel that way? Things are too clear almost like my eye glass prescription is too strong