Can you help me ?estrogen, face oddness,dizzy

Dear MAV People,
I have had dizzy problems on and of, mainly after long car journeys or plane for the last 18 months, first
occasionally , now more or less everyday.
Obviously I don’t want to bore you now with too much information ,
but the brief outline is as follows…

I have had many tests and seen many doctors both here in Europe and in
the US where I unfortunately got stuck with a severe attack recently.
The only idea seems to be MAV , although some say yes and some say
no , and I have been given medication…Flunarazina but I feel that before taking this
I would like a clear diagnosis that I understand ,and treatment that
is not only drug related if possible.Or to be able to discuss if this is the right drug for me before taking it.My doctor told me IF I wanted his help to take this for 4 months and then come back. It seemed like he didn’t really care.
I never get headaches, no spinning, no flashing lights. Just huge
instability , wobbly legs,the feeling like I have cold blood running in my arms, weird sensations in my face.I feel it gets all pinched and sucked in, I feel my mouth being odd, like I look like someone else…No one seems
to really understand the different make up of what I get and feel or
be able to make any sense of it.When I get really bad attacks I can’t talk without crying.

I am 45 years old, have very very low estrogen levels and was put on
Jasmine the birth control pill as I was having hot flashes and my periods had stopped to.It looks
like I have an early menopause The dizziness has got worse and more
frequent since then, but my doctors here do not seem to give this
much importance. I have only just now noticed that the dates tie in
but not sure how relevant this is.
I am nervous of stopping the pill ,because I would then have such low
levels.
I would like to know more about this but pulling together information
and expertise seems to be impossible.
I have started the migraine diet ,but love any advice or input from
someone who really understands the problem on a deep level. I have
bad days and not so bad days but not any good days anymore. I used
to be healthy and full of energy.I use to travel a lot…I can now not even think about going to do the shopping without wondering if it will be ok.
I am scared to go far from home in case I feel unwell.I get so scared.
Reading the forums on the site I realize so many of you have it worse than me, and I am so sorry to moan.
Anyone that could help me make sense of any part of this would be so valued. Does anyone else have the weird face ,eye and head feelings ?
Anything esle I should know or think about ?

Thank you so much
Penny

Penny - this illness brings on so many weird symptoms. I do have a lot of facial pressure, and I just generally feel very odd. My main symptom is disequilibrium and fatigue.

Hi Penny,

Sorry you are going through this. Many here can relate to the feeling of not wanting to go out and being unable to enjoy life to the full due to symptoms.

First off, whereabouts are you? You mention doctors in The States and Europe. Just wondered if you are seeing the right doctors. There are a number of super specialists in the field of dizziness in the states. I wondered if that is who you have seen.

Migraine can cause a host of very strange symptoms - not just in the head but in the body. I haven’t personally experienced the facial symptoms you describe, but I do know what it is to get crazy symptoms. For example I can get a feeling like my arms don’t belong to me. People also frequently complain of facial numbness, like after a visit to the dentist. However migraine is so strange that if you are experiencing the dizziness and you have some other odd stuff going on - you have been checked out for other conditions - which it sounds like you have (generally if doctors draw a blank it’s because they haven’t found anything they can pinpoint) then it’s likely it’s MAV. It is one of the major causes of dizziness - although still little understood by many doctors. And the dizziness is generally accompanied by other weird symptoms.

Migraine can also be very effected by changes in hormone levels and the pill can exacerbate migraine symptoms in some people. It does sound like an early menopause may have brought this migraine problem to the fore for you, unfortunately. I am surprised none of the doctors have picked up on that, which is why I am wondering if you have seen the right ones.

Migraine also tends to be a diagnosis of exclusion. They say that if you take the drugs and they work then it’s migraine. There is no definitive test that will tell you if that’s definitely what you have. However, as you will probably see from this board, many people don’t react well to a certain drug but will get relief from a different one, so it’s not that simple. In one sense what your neuro did sounds harsh, but in another way he wants to see how you react to the drug and give it a fair go. He will never be able to tell you or anyone else, they definitely have MAV, they can only treat what they suspect to be MAV and hope it works.

It’s true it is easier for some as they experience very classical migraine symptoms - aura - photophobia etc… I do get these, but I know people who don’t and nor have they ever had headaches.

As you have been seen by doctors and advised to do this I would suggest taking a drug, although I am a little surprised by the drug you have been given. I tried flunarizine but only after trying a number of other more common migraine preventatives first - mainly because they have a less difficult side effect profile and a shorter half life. Flunarizine stays in the body for quite a while after you stop it. It wouldn’t be a drug I would start with.

Which brings me back to my initial question- what doctors have you seen? Are they super specialists in the field of dizziness. You need to talk to someone who really understands migrainous vertigo and regularly treats it.

best,

Hannah

Dear Hannah,

Thank you so much for your reply. This sure is a weird thing we are all trying to live with.
I live in Italy, I was in the US only for 2 weeks but ended up seeing a doctor ans neurologist there as I had 10 days of it all really bad, Did the MRIs and MRA there. Had been told before I left after all the ear and postural tests that maybe it was migraine but the neurologist in the US said he doubted it !
Cam back to italy and another doc confirmed he thought it was migraine but did nothing to explain , just gave me the pills.I have not been able to find anyone specialized in italy at all. Like you said, I know I need someone who really does only this all day long.
It has been hard for me to get info…thank goodness for this site.
This week I am talking to a doctor in the UK who is a specialist, I hope to be able to go see him ,once I can travel.I don’t know how much he will know re the hormones or how I can compensate for the estrogen I am lacking if I cannot take the pill. Again, my gyno knows nothing about dizziness and migraines and does not seem to know what to do. If this specialist suggests medication, at least I hope he will be able to tell me why he wants me to take that particular drug and discuss side effects with me.
My arms feel strange too !
I hope you are having a good day today , and thanks again for finding the time to write me.

Penny

Hi Penny,

It’s good that you have had all the tests as it makes it easier to consult with people on the phone. I am guessing if you have had all the tests then they feel more confident in giving you a phone diagnosis.

Which specialist are you talking to in the UK? I am in the UK and have been seen in both neurotology and neurology. Don’t know if you are aware that neurotologists (as opposed to neurologists) are specialists in dizziness. Although often people can be referred on to neurologists for the management of migraine once they are diagnosed with migraine - I was.

There is a doctor in the States that many people on this site go to - in my opinion the specialists in this field in the US are more specialised and more up on MAV than any docs in the uk - he is called Dr Hain and he works in Chicago. He is one of the top in this field. He does phone consultations with people. Someone recently posted the number you have to call to set this up.

Based purely on my own hunch I think you probably have MAV. Generally when people have all the tests, the MRI’s etc… and the shows nothing, but they are perpetually dizzy with some other weird symptoms, it’s very often MAV. When I was first ill I scoured the internet looking for answers and quickly worked out there aren’t actually that many things that make people dizzy. A common one is vestibular neuritis also called labyrinthitis, but that wouldn’t explain your weird facial symptoms and sensations, there is BPPV, which causes a specific type of spinning attacks in certain postures, doesn’t sound like you have that and again, wouldn’t explain the other symptoms. There are a couple of scary things which would generally show up on an MRI, so they would have looked for those and ruled them out. Once you eliminate all the other stuff you are left with MAV.

I think you are doing all the right things, if the doc who gave you the flunarizine didn’t inspire you with confidence, I would seek a second opinion. However, I think, knowing what I know, I would definitely try drugs for migraine. I would probably just want to talk to a more supportive doctor before I decided which drug to go with. If you are going outside Italy for advice, I might be inclined to try a phone consultation in the States rather than England. Although the care I have got here has certainly not been bad, just maybe not quite as informed as some that people on the board in America get.

Let us know how you get on,

H

Hi Hannah,
Once agin, thank you for your help.
The doctor I have arranged to talk with in the UK in the next few days is Doctor Surenthiran at the Medway hospital in Kent, I got in touch with him from various posts on the Dizzy Times web site and an article in the Guardian, he is an neurotologist , not a neurologist.
He will do a phone consultation for me now and then I will have to do and see him.I do feel happier knowing I have a doctor slightly closer to home if at all possible.
I have read about Dr Hains, thanks for that input, I will keep it in mind if the UK thing doesn’t work. It’s good to know you suggest he is good.At least I have a few alternatives.
The thing that scares me the most , especially reading all the posts here are the meds…seems like everyone has such a nightmare with them and that the right one is so hard to find.And the most confusing thing is the whole hormone stuff that I have to co ordinate too.
Step by step…it is all so new to me. Anyway I have had a better few days, am following the diet , waiting for my doctor to call, and trying not to be too hard on myself !
Thanks for your support,
Penny

Hello,

Haven’t heard of the doc you are seeing as I am in London, so have only seen specialists here. Fingers crossed he is helpful to you. I totally understand wanting to be in contact with a doctor nearer you.

I don’t know if you have seen the thread on the the first page about periods and hormones called ‘to the ladies…’ There is a bit at the end of the discussion where they say Dr Hain recommends stablizing hormones to combat MAV. A member called Molly is going to try the estrogen patch prior to her period to combat the dip that goes on then which increases her symptoms. I thought of you when I read this. I forgot to say that doctors do say that menopause can sometimes cause MAV to cease but in others it can cause it to start or increase. Unfortunately it looks like you are in the latter category which is why things got worse. Although this is complicated by the fact that you have gone on the pill - and docs also say that can either help people with MAV or make them worse. It depends on the individual.

At least if the doc in England doesn’t have an angle on the hormone aspect, it sounds like Dr Hain would, so you have a back up option in terms of advice if the doc in England doesn’t work out. As I said, Hain does do phone consultations.

I know for me and many other women a period will bring on an increase in symptoms - this is well documented, so it makes sense that the low estrogen could have caused things to get worse for you. I’m surprised the docs you have seen haven’t made the link re the low estrogen. Some women only get migraines around their periods due to fluctuating hormones. I would have thought any doc worth their salt would know this, but then how unhelpful doctors can be never ceases to amaze me.

Sorry I forgot to mention the whole hormone aspect in my first reply - was very dizzy when I wrote it :frowning:

My guess is that it will take a two pronged approach - work on the hormone aspect one way or another and also take a preventative drug. The treatment of MAV often requites a multi- pharmacy approach.

The other thing I was going to say is try not to be scared of your symptoms. At first, when it is unfamiliar, dizziness can feel terrifying. I do most things despite being dizzy and nothing bad ever happens. It’s true I can’t drive a car (never passed my test) so don’t have that to contend with that - being in charge of a vehicle when dizzy is a different matter. But I go out, take transport, shop, socialise etc. It’s true sometimes I don’t want to do those things because I simply feel too ill, but if you think you can manage things there is no reason to be scared.

best,

H

Good Evening Hannah, Thanks for your mail, the hormone stuff was useful and today I saw my gynocologist who was much more interested and curious and sympathetic than the “specialists” I have seen so far. Anyway, we talked hormones and are trying new route, and will see what happens. It makes so much difference when a doctor is interested and asks questions.
Your words about not being scared really helped me…you read my mind. I do feel scared a lot of the time and it is so against my normal fearless , former being !
I am learning not to be and to do as much as I can. I don’t drive and never have, so that is not a problem !
I hope to talk to the UK doctor soon, when I get to the uK to see him I am sure he will start me with some medication, I am getting my mind round that and am less terrified about the implications of that too.I will let you know.Know how much you have helped me.
Hope you are doing ok with your dizzies!
THANK YOU
Penny

Hi Penny,

Really glad I could be helpful in some way. Also hope that the UK doc provides you with a treatment plan and way to get you back to health.

Feel better for knowing that there are others out there, going through what you are going through, and who understand. You are not alone.

Definitely let us know how things go with your consultation and anytime you have queries just ask. People are very friendly on here.

best,

H