New here, looking for help!

hi everyone,
my name is meredith and im new here…although i have been reading stories for quite some time!! long story short…been through the whole routine…started last year feeling reaaly off…didnt know what was going on…it felt like i was losing my mind…
had all the ear test,one ear has high level mri ,cat scan, every things fine
have allergys, ent says borderline minieres, nuero says vertigo!!!
mine dizziness last for weeks at a time…
it feels like constant 24/7 dizziness not spinning but light headedness
constant brainfog/ confusion
looking at life through someone elses eyes
totally off my rocker
like im in the twillight zone
it feels like living hell…
the nuero gave me meclzine, i ve been on 75 mg 3x a day, and nothing, im still dizzzy…
on my second day of topomax…still confused if that is for the dizzys??
does anyone else have these same symptoms??? i have two little girls, and i feel like this thing has taken over my life…
i just want to be back to me!!!
what are the best meds for the brain fog/dizziness??
any help, much appreciated!!!
thankyou, meredithMEREDITHHNY

Posts: 1
Joined: Mon Jun 01, 2009 4:43 am
Private message

— Begin quote from “MEREDITHHNY”

hi everyone,
my name is meredith and im new here…although i have been reading stories for quite some time!! long story short…been through the whole routine…started last year feeling reaaly off…didnt know what was going on…it felt like i was losing my mind…
had all the ear test,one ear has high level mri ,cat scan, every things fine
have allergys, ent says borderline minieres, nuero says vertigo!!!
mine dizziness last for weeks at a time…
it feels like constant 24/7 dizziness not spinning but light headedness
constant brainfog/ confusion
looking at life through someone elses eyes
totally off my rocker
like im in the twillight zone
it feels like living hell…
the nuero gave me meclzine, i ve been on 75 mg 3x a day, and nothing, im still dizzzy…
on my second day of Topamax…still confused if that is for the dizzys??
does anyone else have these same symptoms??? i have two little girls, and i feel like this thing has taken over my life…
i just want to be back to me!!!
what are the best meds for the brain fog/dizziness??
any help, much appreciated!!!
thankyou, meredithMEREDITHHNY

Posts: 1
Joined: Mon Jun 01, 2009 4:43 am
Private message

— End quote

Has anyone said anything about possibility of MAV to you, as in the doctor or doctors you have been to see.

I can tell you the meclizine did nothing for me with the dizziness.

Everyone is different and what works for one may not work for another person. You may need to find someone who specializes in this as all neuros are not familiar with this disease.

What dose of the Topamax did he put you on and are you increasing it over time.

There are a lot of folks here who have had success with medications and others that have not so it is a lot of trial and error.

Plus there are a lot of life style changes that will help also…

One is getting enough sleep
Eating correctly
Staying on a schedule
Diet modification
Drinking plenty of water
Supplements have helped some here

You may want to read “Heal You Headache”

Did you have headaches or do you have headaches now with the other symptoms?

Some of the others have taken the topamax and will tell you their experiences.

Sounds familar, but as timeless points out, without a possible diagnoses, we can only say that it sounds familar. The thing with MAV is that the symptoms vary for everyone, but there are also alot of other diseases with similar symptoms. I can say though that it “probably” isn’t meniere’s because you say that the dizzyness can last for weeks at a time.

For me, meclizine puts me to sleep like a narcoleptic on sleeping pills. I think it helped with the dizzies, but I could not stay awake.

Brian B

BTW, I understand how your symptoms may be taking over your life. It’s a lot of work, but with the proper diagnoses, and treatment plan, things can be brought back under control and you can get most of your life back.

hi, and thanks, yes the neuro said its mav…
he started me on 25mg of Topamax working my way up an additional 25 mg a week until 100…
im not a big headache person, i have have maybe 3 migraine in the past 5 years!!
im still unclear if Topamax is for dizziness or migraine?
or is the dizziness the migraine??
and i also think meclizine is like baby aspirin!!! im trying to keep the faith!!
i just want to know what works for the dizzziness,
i dont know how much longer i can emotionally handle all this, i feel like ive been a puching bag!!
not to mention my poor kids, have had a horrible mom lately!!

Hi Meredith,

Yes, the dizziness IS the migraine when you have MAV. (It’s also known as vestibular migraine) Many people think of migraine as just a headache but it can take many forms - visual disturbance, vertigo, lightheadness, sensitivity to light etc… A doctor recently suggested to me that the dizziness is a state of constant aura. Some people with migraine, for example, get constant visual disturbances but nothing else. MAvers can have continuous dizziness. Some people with MAV have never had a migraine headache at all. I had headaches years before the MAV happened. I was fine for a long while, the MAV came later.

The fact you have had some migraine headaches means that what has likely happened is that the nature of the migraine has changed over time. That happens.

Topamax is a commonly used migraine preventative, you usually have to stay on the drug for a while to see if it works, it’s rare the results are instant and it can take weeks to see results. There are many different drugs used as preventatives and it’s often a case of trial and error to find out which one will work for you. (Read the success story thread to see how this can happen - there is hope.) The preventative drugs that are used are, for the most part, the same as those used for people who have a lot of intermittent migraine headaches. Although some drugs have been found to be slightly more successfull for MAV than other. Unfortunately the abortive, on the spot medications for migraine, don’t work for MAV, this may be because they work on the pain aspect of migraine but not the aura. Some people get relief from meclizine but many don’t. It’s a drug that is often effective for people with a different condition called vestibular neuritis (inflammation or damage to the vestibular nerve usually caused by a virus.)

There is a lot of excellent information on this board from doctors in the field. Have a root around in the information threads where there are excellent articles on what MAV is and how it is treated.

It feels horrible and scary at first, but there are treatments that can work. The success story thread should cheer you up.

H

thank God for this forum, and evey ones help!!!
its so reassuring to know there are othere people who understand what this garbage is like…
my poor husband tries, but i dont think you know until youve experienced it…
it was my first visit with the nuero, and yes he was very sweet, but i do this he is a liitle old school,
and out of the loop…
when i used the abbreravation mav, he wasnt familiar with it…nor the forums online…
well…i will continue on topomax… im glad to know the constant dizziness is the migraine…
i tell you, after 4 weeks, of this, is sure is tuff…any thing other than meclizine, that might help now??
i think i will call the nuero today!! thanks everyone!!

— Begin quote from “MEREDITHHNY”

thank God for this forum, and evey ones help!!!
its so reassuring to know there are othere people who understand what this garbage is like…
my poor husband tries, but i dont think you know until youve experienced it…
it was my first visit with the nuero, and yes he was very sweet, but i do this he is a liitle old school,
and out of the loop…
when i used the abbreravation mav, he wasnt familiar with it…nor the forums online…
well…i will continue on topomax… im glad to know the constant dizziness is the migraine…
i tell you, after 4 weeks, of this, is sure is tuff…any thing other than meclizine, that might help now??
i think i will call the nuero today!! thanks everyone!!

— End quote

You sound like since this has just started for you , you are very frustrated right now. And we have all been there so we understand how you feel. With time you begin to understand what this is and what you can and cannot do until you get treated properly.

If you will try some of the life style changes it at least helped me to be able to manage the condition and the dizziness did get better with those changes…

First get plenty of sleep. Go to bed the same time each night and get up the same time each morning.
Try the diet modification to see if something you are eating is triggering the migraine symptoms. It is tough but for me it was well worth feeling better.
Try and get a little exercise each day if it is only walking a bit. Some times the body will start to compensate.

Medication is fine for this disease when you find the one that works for you but there are other things that have to be done int addtion to help you feel better. That is my opinion.

It is very hard for those not effected by this to understand how you feel. We have talked many times about the fact that we MAVERS …look fine but are not. So that makes it hard for others to understand that we feel awful especially when our symptoms are elevated.

Also you may ask your doctor about taking something for the anxiety which could calm you down until you get the dizziness under control. Some here take benzo’s but you need to use them carefully as they are addictive and it can be very difficult to come off them if used for an extended period of time. But if used correctly they can be helpful.