Strange symptoms

please help me, i feel like i am going mad
i have had migraines for as long as i can remember, but the vertigo started near 3 years ago suddenly, about 2-3 months after the birth of my son
took til late last year to get a diagnosis of MAV, but has anyone else got this diagnosis and thought it wasnt right? its kinda like i refuse to believe it and hope its something can be sorted with a tablet, none work for my vertigo at all
im only 29 and feel iv been robbed of enjoying normal things, im also a single mum to 2 as my marriage broke down i believe due to this as the ex couldnt handle my down moments and havin to help me so now i go it alone
i feel depressed and anxious alot, but mainly scared i could cry right now
i have searched the net for symptoms but i have some that i just cant find and they scare me, such as
heavy head- i feel like my head weighs a tonne and my neck cant hold it sometimes
blurry eyes if i look away fast and try to focus its like they take a moment to focus
pins and needles in my limbs sometimes all of them at the same time
also stomache upsets seem alot worse when i have a bad bout of migraine or the vertigo is here for days
i have constant vertigo and migraines maybe 1-2-3-more times a month
i cant use perfume, spray, furniture polish, anything highly scented as it starts my miraines off
very travel sick, and travelling makes my vertigo worse i get off a bus after a half hour journey and its like im on a boat so bad i could pass out
please if anyone can give me any insight and try to ease this, by letting me know they have any of the same as i do
steph

Hello there,
Sorry to hear your having these weird symptoms but I find that MAV is full of weird symptoms
You sound like you have MAV as some of your symptoms are similar to mine for example I get the heavy head feeling sometimes and the pins and needles, I also get that dizzy I feel like I’m gonna pass out just mine happen at anytime not travelling, I find it’s hard to find symptoms that related to this condition online because I personally think there are just so many symptons of it, that’s why this forum is great it shows ur not alone and ur not the only one feeling this way
I hope u feel better soon

It was extreme fatigue and heavy head that made me decide to lie down which sent me in a severe vertigo spin followed by unstoppable heaving and puking bile in the doctor’s sink. A shot of phenagren got me to stop puking and staying upright helped the spinning. He (an internist) thinks I have Meniere’s Disease but my symptoms match MAV better.

I don’t have any answers, just wanted you to know that someone else has the heavy head.

I’ve managed my own common, classic, and ocular migraines for over 20 years. Vertigo is not a good change. I wouldn’t wish it on anybody. I hope you find treatment that works for you soon!

Steph,

Pretty much all of us on this forum know exactly how you feel and it sux. It sounds like a you are doing a good job removing as many triggers as you can. You’ll find a lot of information on this forum - keep sifting through. If you’re unable to get better trigger control than you already have it might be time to look into starting on a preventative med.

Hang in there!

Vic

i too had extremely heavy head, pins and needles, chronic fatigue etc. im still not 100% about diagnoses but i can say looking at all different diagnoses does your head in. i personally wont recommend it. the only thing would be trying to get vestibular test if you havent already. its ALOT harder when kids are involved and when your on your own i too am in same boat. i have got slightly better, im not on tablets as so far i have been unable to tolerate them. The only thing thats helped is trying to eat healthy, walking when you can and letting some things slide ie housecleaning etc.
trying to control this beast just makes me mad so ive let it go which is hard. Some people have had great results with meds and others are on a med treadmill. try not to put a time limit on this vertigo if its going to get you down if it doesnt happen. have you seen the cfs discussion? maybe its worth investigating?? chronic illness plays havoc on relationships, finances etc i know its not easy (oh and the heavy head is getting better and better yours will to just keep moving)

Hey, Steph1982. Sorry it’s so hard on you. I’m in a MAV zone again myself after roughly 8 weeks crash-free. It’s perhaps not as bad as it used to be, so I feel for you reading your description.

Anyway, blurry eyes! And red! Silly me…i always think i’ve got something in my eyes and they’re stuck to my contact lenses. Until later in the day when dizziness and weirdness strikes.

The pins and needles aren’t so severe as before, but definitely my hands and feet have…well…almost like an ‘aura’, a kind of numb sensation rather than such pronounced pins and needles.

To be frank I’ve only recently noticed that i get either a momentary sense of needing a bowel movement (it’s very weird to say this publicly, do excuse) or nausea. I realise these feelings have always been there but possibly overridden by other more urgent symptoms.

Head has sensation, buzzing in bands rather than heaviness, but I notice tension in the neck.

I live alone and have had to learn to do things a little differently and ask for help sometimes. That’s hard! Thank goodness i found this forum because some of the symptoms seem quite peculiar to the point i wonder if i’m actually some kind of nut making it up, you know going all psychosomatic on myself. And then I read others with same or similar, and it puts me at ease. Not all of us share every symptom in common, however. All the best x

@Amy4: “just mine happen at anytime not travelling,”

When you say traveling, are you referring to being in motion like in the car, train, plane, etc? Or do you mean when you’re on vacation and traveling far away? I’m just curious because one of the strangest things about my symptoms is the fact that they disappear completely while on vacation!

Mine happen when I finish travelling in a car n train etc but in a plane it happens during take off n landing n whenever the plane turns, whilst on vacation though I don’t get much dizziness think its coz I can just relax and be stress free :slight_smile:

Unfortuntely it does sound like MAV to me, i get heavy head and brain fog and sometimes i feel like pulling my own head off, i get so fed up with it! Also pain at the back of the head/neck/shoulders.
I also get sudden dizziness that feels like i might drop to the floor but not like a faint if you get what i mean.
I have found the diet to help (i am still not 100%) but certainly feel better and am finding out new triggers all time time. Have you tired it?
I hope you get some better days soon, this is a horrible illness to have to live with esp when you have children to care for - big hugs x

Dear you,

It sounds unreasonable hard to be alone mum with MAV. I have to small children, and I have no idea how I would deal with it without my boyfriend.

I have to just say one thing; its okay to feel sad, depressed and be a little mad! Dont blame yourself. Instead remember how increatible cool you are than you have kept it going til now. You to will get throgh this!

Very best and a hug from me to you…

I’ve had pretty much all of those same symptoms over the years. I can definitely relate to feeling like you are on a violently-rocking boat after your journey somewhere. The two things I have found that help with that are: taking a small dose of valium (or other benzo of choice) before you leave, and trying to time your trip so that you can just rest or go to sleep when you get there.

You are not alone in this, and you are not crazy for feeling all these weird symptoms. I’ve had this for 5.5 years, and I’m still amazed at how many ways my MAV brain can impact my body and my life. I hope you find some relief, best of luck to you.

thanks everyone so much for writting on this thread, iv not been on as been under the weather but to come on today and see them has really brightened my week
me and my only boyfriend after my husband have just split last week so things have been very emotional so just couldnt do anything but sit or try to sleep
the job centre here are trying to get me back into work soon as my lil 2 year old son starts nursery in september so they want me to start part time, i cant imagine not being in the seclusion of my house especially on my bad days
the lone parent advisor has asked me to fill in forms for disability living allowance which i have done but i doubt very much i will get it as have heard alot of people get refused for this condition, it maddens me to think they dont see it is a life changing condition and alot of the questions i had to answer were very silly
can u lift a empty cardboard box
can u get to the toilet yourself and clean yourself
:shock:
has anyone on here been awarded disability?

steph