I have been fighting vertigo since Dec 2009. I had horrible vertigo attacks for 2mths then was left with the feeling I was on a boat all the time or things are floating. This has been the worst experience of my life. I have noticed that it always gets worse with my cyles. Have any of you ladies noticed that? I have just recently been diagnosed with MAV but have not started treatment yet. I go on the 30th. He says he will start off with amitriptyline. Has anyone else tried that medicine? Is it common to have the vertigo for almost a year straight all the time?
Welcome Harley,
The answer to all of your questions is yes. This can go on 24/7, worse with periods, etc. Textook MAV. In the phase you describe, the term is chronic migrainous vertigo. Have a look at the MAV survival Guide up above where I discuss this further.
The following threads all mention amitriptyline in them somewhere. Have a read through them when you can to find out how others handled it. I know that this med can really be a miracle for some people but not so great for others. Impossible to know unless you just dive in.
Good luck and post any Qs you have.
Best … Scott 8)
Hi Harley,
Could almost have written what you write - I also started out with horrible vertigo attacks and am now - since April 2010 - left with constant dizziness, worse with periods and worse when I have a cold or other viruses . I started Nortriptyline 5 weeks ago, a tricyclic antidepressant as is amitriptyline. I’m still on a very low dose as I am med sensitive but I might have experienced a slight relief in symptoms. Best of luck to you,
Christina
Hi Harley, I notice a definite worsening of synptoms around the time of my period. I too am not having any treatment yet, I see the neurologist on 2nd December. Have you read all the info on this site? I found it invaluable and have given up caffeine and chocolater and started taking vitamins. I have noticed a slight lessening of severity of attacks, so it maight be worth you trying this too. Good Luck!
Thank you for the information. Its good to know others know how I feel with this. I will let you know how the doctor’s appt goes and treatment 
Harley,
Welcome. Sorry you have this illness also. I used to get worse before periods too but now that i am in menopause it seems like it’s almost 24/7 on some days - the floaty feeling and the horrible anxiety.
I hope the meds work for you - i haven’t started any yet. I have to get brave and start them real soon because i’m sick of living like this. I used to get sick just in spring/fall but now it’s all the time. Been sick for 30 years. there has to be something out there to help us that’s what i keep thinking.
Welcome
chris
Chris,
I’m sooo sorry you have been fighting this for so long. That would be horrible. I am worried about starting meds too. I hate taking medicine…I worry about the side effects. But I have to do something. I had to quit one job because it was too fast pace with this dizziness and now I am on short term disability with this job. I hope things get better for you soon.
Kristen
Im so sorry you had to quit a job. That’s gotta be hard. I hope you find a medicine that works and i hope i do too once i get brave
i hope you feel better real soon!!!
chris
Hi Kristen
Glad you found the board, it’s a goldmine of info and support when you find yourself stuck in this weird dizzy place. I think most of us have anxiety about trialling meds and would rather not be on them, but a sad fact of life seems to be that they’re our main hope for getting this thing under control in addition to trigger prevention.
I did three months on Ami some years back now and although it turned out not to be effective for me, I don’t recall the side effects being too horrendous (and with hindsight they’d also put me on a pretty enormous dose - the sides should be lower if you start lower and workup), think I was mainly sleepy and hungry!.
I think the thing to be aware of is that a lot of migraneurs do seem to be more sensistive to drugs than other groups of people, so do be prepared that whatever drugs you end up on, you may on occasion need to reduce a dose if you are getting bad side effects or increase your dose more slowly than your doctors suggested schedule. It’s much better to do this and take it slowly/let your body adjust, than to try and tough it out though more severe side effects and then end up giving up on the drug too soon because it makes you feel bad.
As for periods, oh yes, I can guarantee that I will feel absolutely awful for the entire week before I’m due on and often mid cycle too. Not sure if you’ve got an android/iphone, but there’s a great app called period tracker - or maybe it’s just me that’s incompetent and needs it!, anyway, I still bizarrely don’t always instantly make the connection when my symptoms suddenly go sky high, but this little gadget keeps track of when you’re mid cycle and due on, and will even send you little alerts when you have so many days to go. It’s like, Aahh!, now it all makes sense!! (can I just add in here that I get really bad brain fog when I’m dizzy but actually had a reasonable IQ in my previous life lol). Once I manage to get my symptoms under some kind of control I think I’ll be investigating birth control pills to see if I can regulate me hormones a little better and stop this monthly deterrioration.
Good luck with your neurologist, and if I were you I’d try and arm myself with a list of questions to take too. Gernerally by the time i’ve got there, battled thorough the waiting room fleurescent lights etc, I’m such a dizzy wreck I barely know my own name. At least if you have your list you can check they’ve covered everything before you leave their office.
Take care
Helen
Helen
Hi Kristen,
I’ve had dizziness since I was 29 years old with 24/7 rocking.
I’m now 47 years old; My Migraines have become worse over the past 5 years, especially before and during my monthlies.
Recently I told my Dr that I wanted to try and stop or slow my periods, as I couldn’t take it anymore.
So he is letting me try HRT.
I haven’t felt this good in years, it was almost immediate!
There was so many times I had discussed hormonal issues with my Dr’s and also with a local menopause clinic in town, They took blood tests “only” and said that my hormones were “within normal range” Obviously this wasn’t correct, as my reaction of the HRT has done wonders for me.
I had a couple of days with higher rocking symptoms, then it all leveled out and I’m fine, it has settled my brain better than any antidepressant or anticonvulsant I’ve tried and I’ve tried a few.
Maybe it would be worth while checking hormone therapy out as an option before medications.
I’m also on Prothiaden antidepressant, which has helped as well.
Best
Jen
xx
Well I went to the doctor tuesday and they have started me on amitriptyline 10mg and valium 2mg (for when i have a bad day). I’m a little nervous about taking medicine but I can’t keep living like this. Does the Valium really help or does it just make you sleep?
Valium is a godsend for many here - I’m sure when Vic sees your post she will write an ode to valium 
I take valium off and on now and it does take the edge off. I have tons of anxiety now from menopause so sometimes it’s very hard to drive so i don’t think the valium works completely.
gosh i was thinking maybe some bioidentical hormones also if i can’t handle the celexa i’m gong to start tomorrow.
Jen did you gain weight on what you are on?
Harley - good luck in whatever you try - hopefully youll get relief soon!!!
chris
My cousin was the one who pointed out to me that I’d get dizzy before my periods, at that was before I knew I had MAV. After having a baby and experiencing the Big bang, I’m curious to see how it will be. If it is bad, I will start a low dosage of birth control and not get my period to keep the levels from dropping, which is what I believe causes the dizzies for me.
— Begin quote from “jennyd”
Recently I told my Dr that I wanted to try and stop or slow my periods, as I couldn’t take it anymore.
So he is letting me try HRT.
I haven’t felt this good in years, it was almost immediate!
There was so many times I had discussed hormonal issues with my Dr’s and also with a local menopause clinic in town, They took blood tests “only” and said that my hormones were “within normal range” Obviously this wasn’t correct, as my reaction of the HRT has done wonders for me.
Maybe it would be worth while checking hormone therapy out as an option before medications.
I’m also on Prothiaden antidepressant, which has helped as well.
Jen
xx
— End quote
Question for Jen re. above
Your post has given me a glimmer of hope - I’ve noticed an increase in my MAV severity in recent years and I too wondered if I was in perimenopause, had the blood tests and was told ‘no’ (I’m 43). Did your doctor say whether blood tests can be normal but perimenopause has actually started (i.e. the tests aren’t sensitive enough)? I’m really tempted to ask my GP if I can try HRT after reading your post. I might wait till I see my Consultant in Feb next year. She asked me to keep a diary of my MAV and periods so she’s obviously wondering this too. When I have my bouts, they usually come on pre-period, stay the length of the period and longer, improve slightly before coming back mid-cycle so it’s pretty much all the time!
Are there different types of HRT and if so which do you have? (very ignorant on this sort of thing!)
Cheers
Dizzy Izzy x
Hey Dizzy Izzy,
My Dr (dealer) just gave me a packet of Non Bio- identical hormones and said take them as soon as possible,I only found out it was HRT meds, after buying them and reading the leaflete.
I was shocked that he prescribed HRT without discussing it with me first, as I thought they were just the contraceptive pill (low dose) as I wanted to stop the period completely.
So I tried them anyway.
I’ve had many blood tests in the past years for peri-meno ( last year ) and all have come back normal, and that was at the menopuase clinic in Brisbane Australia, they only tested my blood , Not my saliva ect:
My Dr is basicaly my dealer of soughts, I say what I want and he writes a scriped.
He knows diddly squat about Mav I’m teaching him!
Cracks me up! :lol:
I’m on Trisequens, for now.
also , some Migrainuers can become worse from hormone treatments, I suppose I’m one of the lucky ones, but remember the dose is low.
jenxx
Jen – what’s the story with HRT these days? I don’t want to freak anyone out but I thought it was not cool because of it causing an increased risk for breast cancer – particularly the estrogen positive type. Has HRT evolved? I don’t know the current story on this.
Scott
I believe “they” are saying that short term use - no longer than 5 years is okay but beyond that not such a good idea. I had heard from a dr that they just prolong the inevitable and i took enough in my younger years in form of birth control that i didn’t want to tht’s prob why i’'m miserable right now.
My mother took prempro for many years - get this - she was in her 80s when she quit and i swear it kept her young. Now that she’s off her brain doesn’t work so well but then again she is 93 after all.
my sisters took it off and on for several years but not too long.
guess again with any meds personal decision
i have a few friends that take the bioidenticals like Suzanne Somers did - i guess they are still hormones but not synthetic. a bit better but still hormones - i guess even the estroven (black cohosh) over the counter which i might try still has estrogen like properties.
anyway hope you all feel good today. Just my two cents worth
chris
Hi Scott.
Yes I’ve been busy reading the all the nasty stuff,
My mum was on premarin and primulet for 20 years and swears by the stuff, she is in her mid 70’s now, and is as fit as a fiddle.
There was a study done, mainly with over 60’s menopausal women, during the study they found the menopausal women had more cases of the “dangerous type” of breast cancers and womb caners ,after being on it for "over’ 7 years.
Something along those lines.
Bio-identical hormones have had no science based studies due to the fact that they are considered to be “Natural”
From what I’ve been told by a friend, the bio-identicals take a LOT of fiddling, to get the precise dosage, messing even further with hormones isnt something I wish to do, due to my Mav.
Here we go Scott.
earlymenopause.com/hrtstudy.htm
jen
Hi Harley,
My Migraine Vertigo condition also started out with VERTIGO…waking me up from sleep in the wee hours of the moring with an illusion that the room was spinning. Over a couple of years i had a course of 2 Spins a year but always resumed back to normal within 48 hours. Then i had another really severe spinning waking up from night…became extremely sick (as i always do with intense vertigo) and that is when i began to feel constant rocking like motion. From that day on is when this condition became Chronic.
Joe