Just found you - Brief Intro

Hi,

This morning, after a huge “wobble” on the vertigo front, in desperation I searched again for info on MAV and found this site and feel so relieved.

12 months ago I turned over in bed and had a brief spin followed by six weeks of a feeling of disequilibrium. During this time I saw three different GP’s and an Ear, Nose and Throat Specialist who diagnosed BPPV, it seemed text book and when it went after 6 wks I was so relieved and felt I could get on with my life again.

Then just two months later I had a similar feeling which has pretty much lasted ever since with some really good days when I feel 95% but some bad days when I was around 40 - 50%. I don’t get nausea or anything like that and actual ‘spins’ are extremely rare, if at all. I just wake with a feeling of a really bad hangover/feel drunk and it lasts all day with some relief coming in the evening sometimes.

During August - January I saw 3 further ENT’s and had an MRI which came back as all fine. These ENT’s were at a bit of a loss when balance therapy etc didn’t seem to achieve anything and they eventually put it down to anxiety, as I had had a really tough couple of years leading up to the first BPPV episode. However the only thing that was really making me anxious was this.

I kept a diary and about two months ago realised that I always had a bad week in the lead up to my period then I would generally have a good three weeks, with the odd exception. I went to see a new GP as I had recently changed Doctors and she is sure it is MAV and put me on a really low dosage of Propranolol, initially 10mg 3 times a day. The first month around the time of my period I still had the familiar feelings so when I went back for my review I told her this but said I did think it may have been a little better than usual but it was difficult to say for sure, so she upped the dosage to 20mg 3 times a day and the next time my period was due I was ok. I did have the odd weird few seconds when I felt a bit dizzy, maybe in a supermarket or weirdly enough if I entered a public toilet cubicle and had to turn around in a confined space or reverse in then turn :smiley: but I didn’t have to deal with the 24/7 feeling of just not feeling right. I was so relieved!

Then the last couple of days I have had a cold and last night and this morning used Vicks Sinex nasal spray and this morning I felt soooooo dizzy, really awful, and I got really upset as couldn’t work out why it was bak again as it is not my time of the month either, so in desperation, and convinced they must have my diagnosis wrong again, I stumbled across this forum and one of the first things I read was that nasal sprays can aggravate it! So much of what I have read on here today seems to fit so I am about to embark on a change of diet, regular sleep routine etc etc.

This morning I took a Sumatriptan which I have never used before and I was desperate, and to be honest I’m not sure if it worked or not as I feel a bit spaced out still, 3hours after taking it, and the symptoms are very similar to what I was feeling anyway.

I just wanted to say Hi really, and that I am so grateful to have found so much info and support on here, and whilst I feel sad that my life is going to be so restricted whilst I deal with this I am also full of optimism that I have to try and beat this.

Hi and welcome,

I can relate to a lot of your experience, as mine started off as what seemed to be quite typical BPPV, although in the end I was later diagnosed with MAV (and then to top it all off later on I got proper BPPV on top of it…so confusing!).

I’ve got mine under reasonable control with propranolol (but I’m taking a little more than you, 2 x 40 mg per day) and pizotifen (0.5 mg per day), but I still have times of feeling my balance is ‘off’ (disequilibrium?), and this usually coincides with the week leading up to my period. I also have the supermarket and toilet cubicle problem, even on days when otherwise I am feeling fine.

I would definitely advocate trying regular sleep patterns etc., and seeing if that helps you. I also avoid alcohol as I find that’s a big trigger for me, but other foods aren’t.

I don’t really like it when doctors dismiss things like this as anxiety, as clearly most people who get vertigo are going to feel anxious when things are spinning, but to me the anxiety is a knock on effect of the vertigo, not the cause of it in the first place. I had a majorly stressful time in 2003/4 and never had any vertigo at all. My problems with vertigo started during a much more relaxed and stable time in my life.

By the way, I don’t think the drugs like sumatriptan help with MAV at all (although maybe someone else on here will know more?), so it’s not surprising if you found no improvement. And definitely having a cold (or feeling under the weather/very tired etc) will generally make people feel worse, but hopefully only temporarily.

I hope you feel much better again soon. Take care.

Welcome! I’ve had some relief after taking a sumatriptan, but only if I had an actual migraine headache. It did help with the dizziness for the rest of the afternoon. But the feeling you describe is how I usually feel after taking it–drugged up a bit and spacey. It’s the migraine hangover feeling.

I have been congested for the past two weeks, likely because of allergies, and it is really playing with my balance right now. I’m not feeling as well as I had been, and I definitely agree that colds or being tired will make this crap worse.

Good luck with your meds–hope you feel improvement soon!

Hi Wanna
Another warm welcome to you. This site in an invaluable tool in my opinion. It has been informative, supportive, and validating. A true port in the storm.
The triptans are used for aborting a migraine but not used for prevention, which are the drugs used for MAV. Propranolol popular med to use due to low dude effect profile. Most people seem to be on some sort if serotonin enhancing drug. And many take a combination of meds to get optimal results.
Best of luck on ur journey back to wellness.
Kelley

Thanks for all your responses they are really appreciated.

Today is a good day, thank goodness.

I am going ahead with the regular sleep plan and initially have cut out all caffeine, which is tricky for me as I drink a lot of Pepsi, but I just want to be back to my normal self, not just for my own sake but for my husband and children too, so fingers crossed.

Welcome Wanna!

Glad you found us and hope you continue to find lots of useful info here. No matter how crappy you might feel now, you only have to read the success stories above to know that you can totally bounce back from this again.

Best … Scott 8)

Have had mav for 13 months now, believe it initially started with bppv.

I thought I had gradually got it under control as been on med Propranaol 20mg 3 times a day for 3 months now. I was tending to suffer in the week leading up to my period then having 3 good weeks. This has been better since on the meda and I’ve had a good few months with the odd little blip. In the last few weeks I have been at around 95% good and have felt so positive then last night in bed I had 2 quite bad spins and now feel so awful again. My period is due to start tomorrow and I have had quite a stressful wk with some bad news, do you think this setback could really be down to that?

I cut out caffeine about 6 weeks ago and am very careful not to have foods which may aggravate it. I am just so down that I may have to spend the rest of my days dealing with this. I have a very young family to deal with daily and my husband works away a lot and it’s so hard.

I just want to feel normal again. Sorry for the rant, you’re the only people that understand.

Please feel free to rant, you can rant to me by IM if you like! I wish I could offer some good medical advice, but the only thing I can offer is sympathy, as I am in the same boat as you. I have VN/MAV that started with bppv 10 months ago, and I was spin-free for about six months, then had a mini-spin the other night. It made me depressed and angry, which I can feel in you post, and I don’t blame you one bit. Just when you think you have it beat, you get dragged back into it. My feeling was, “Haven’t I progressed an inch in 10 months?” And here you were at 95% and then a setback, that must have been rough. But at least you got to 95%, that is something that bodes really well for you. I have barely scratched 60%.

And I hear you about the family situation. I also have a young family (girls age 2 and 4) and while my wife does the heavy lifting in taking care of them, those girls are all over me when I get home from work. I really need just a half hour to decompress and lie down, but they are climbing on me, playing princess games where I have to pretend to be the king or prince, asking for stories, screaming and playing games – it involves constant noise and head turning, and then the ritual of putting them to sleep (my girls go down at 9:30pm for some reason), etc. They are the light of my life, and it really kills me to have to tell them, “Let Daddy rest for an hour in the other room.” Sounds like you don’t even get that luxury and you really have your hands full.

Let’s hope your setback is due to your period coming. I see that a lot of women find there is a connection between MAV and their period due to hormonal changes. Keep posting and let’s hope this is just a temporary setback for you.

By the way, periods also affect me as well – I have to steer clear of my wife in the days before her period hits!

Your last sentence has made me smile for the first time today! Thank you.

Today it almost feels like there is a weight in my head that when I move it goes from side to side before levelling off! So annoying and uncomfy!

I absolutely feel worse around my period. In fact, right now I’m suffering as well because it should hit this weekend. It completely sucks that I can depend on 5-7 days a month of feeling more dizzy and “off”.

I do tend to take ibuprofen the couple days leading up to my period, even if I don’t feel a headache. It helps with the inflammation and I’ve found that it can help me feel a bit better and reduce the odds of a migraine headache during my period, which I’ve always been suseptible to.

You are not alone in the monthly misery, let me tell you! It is really great that you feel good in the time around your period though.

Hi,
I too suffer more around my period… oh arent we lucky us girls…
If you have had children , I don’t know how old you are, but there is a thing called the merina, they can insert, it’s a contraception devise, it’s not advised unless you are finnished having babies or if you are planning to have more kids, but if you are in the peri meno stage and have heavy bleeding/pain or other issues it might be good to try.
The only reason they might not use it for you is that they worry about messing with the cervix, or so my daughter was told by her GP.

it sends hormones to the womb and often stops women from having their periods.
so it would be like, taking your contraceptives without having a break.
Some women do have spotting for the first 3 months until things settle.

It can be removed if it dosnt work and I believe it last for up to 5 years.
I have a friend who stopped having a period while using it, she swares by it for her peri meno problems.
I’ve always wanted to try it myself.

check this out.

mirena-us.com/

I was just surprised to suffer this month as since being on the meds, even though they are relatively mild, it has controlled it around my period also.

Do any of you suffer occasionally even though you are on meds to control it day to day?

Last night I found I got spins if I turned onto my back. It feels marginally better this morning.

Hi,
Will try to be brief. Was diagnosed with bppv 13 months ago. This passed after about 8wks but then approx 10 wks later appeared to come back but lasted much longer so in January this year I was diagnosed with mav. The diagnosis totally fits having read so much on this forum. I have been taking Propranolol for 4 months now 20mg 3 times a day and I have been at 95% for 6-8 weeks now. Then in the early hours of Friday morning, I turned in bed and had a spin lasting 1-2 seconds, this happened again a few hours later. since then I have felt awful, 24-7 head not right at all and little spins if I turn to the right or tilt me head towards my right shoulder or try to lie on my right side in bed.

The few days leading upto this had been very upsetting with some bad news and my period started Saturday, approx 48hrs after this initial spin episode, for the 6 months I tracked it my mav was always worse in the lead up to my period which was one of the main reasons I got the diagnosis I did.

Now I am happy to go back to my GP tomorrow but I am concerned that this might be a bppv episode rather than mav and she might change my drugs etc, which so far have worked for me with no side effects, to some which may not suit etc. Or, given the circumstances, couple of days before period, excessive stress, is this likely to be mav which the propranolol just couldn’t control enough on this occasion? I think the symptoms are so similar that I don’t trust my GP to know enough about it. Additionally, I don’t know that I ever really suffered from bppv in the first place or whether it was a mis diagnosis, which would mean this may not be bppv at all! God it’s all so similar it’s just so confusing!

I’m just concerned to go back to my GP if I should just rule it out as a mini relapse?! We’re due to go on holiday next week and I’m even more upset as I finally thought I had this thing under control and could go on hol with my family and enjoy it, now to be stuck feeling so awful again, just praying it passes.

Stress definitely will do it; no need to change the dx.

I hope you enjoy your hols.

Hi,

Sorry to hear you are feeling worse again.
I just thought I would mention that I had BPPV to start with, which seemed to be the launchpad for my MAV. But after many months of MAV and finally getting it under control with medication, I also had another attack of BPPV. It was indisputably BPPV, positive Dix Hallpike, classic room spinning vertigo on lying down, getting back up etc, but only lasting about 20 sec at a time and then feeling fine between (unlike MAV which seems to last hours when I got spinning vertigo, and then take days to recover from, and weeks of false motion etc).
Anyway, my consultant said in her experience people with MAV seem to be far more prone to BPPV as well. Anyway, she did an Epley manoeuvre and I felt funny for a couple of days, then totally cured of that - yay!
If I was you, I would see your doctor to see if you can get an Epley done?

Headed back here after a few years away as I was hoping for some positive new breakthroughs.

I’ve had MAV 10 years, it was triggered by a near breakdown after losing a business and I’ll save you the long story but I ended up on 75mg or nortryptiline and 40mg propranolol a night.

Welcome back Nicolaread. Sorry to see you are still suffering.

I’ve gathered together a few of your Topics under one roof where it makes sense (personal situation updates). Try to avoid new Topics if at all possible and Post underneath existing Topics where there is sensible continuity. This also avoids you having to re-introduce or repeat yourself.

Hi wanna, I just read through this thread and my goodness all sounds so familiar to me.

Have you had bppv return a lot in the past 10 years? If so how did it affect the mav?

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