Any help or advice please- undiagnosed and very dizzy

Hi
I have been reading the information on this site for a while and I would really appreciate any advice anyone can give me.

I am a 34 year old mother of one from Southampton, England. I have been dizzy and lightheaded for 6 months and am desperately trying to work out why.

When I first felt dizzy I was in the supermarket and just felt ‘out of it’ and had a mild headache. I got into my car and drive home carefully. Went to see my GP who said it was labirithitis and gave me a prescription for anti dizziness pills. I didn’t get better so I went back and was referred to an ENT. He didn’t think it could be my ears because I didn’t have spinning vertigo.

My symptoms were
Constant drunk feeling
Light sensitivity
Neck pain
Sinus pressure
Full feeling in ears
Tinnitus in both ears
Problems focusing my eyes
vision problems when looking to the right side only

The ENT ordered an MRI because he was concerned about my eye movements and tracking problems. The MRI came back clear so he said it was probably a type of migraine and to see my GP about medication.
My GP was not convinced so I was referred to a neurologist. He examined me and his only concern was my eye movements on one side. He didn’t think it was migraine because the dizzy drunk woozy feeling was constant, and he said migraine would not be constant

The dizziness then got a lot better for about a month, then my husband and son came down with colds and I was hit with the dizzies again ( along with the sinus pressure, ear fullness, weird eyes etc)

So now I seem to have hit a brick wall. No one apart from the ENT think it’s migraine, does anyone have any ideas ??

Sorry it’s so long
Natasha

HI Natasha,

Many of us here can relate to your symptoms, and I suspect would want to lynch the neurologist that said migraine wouldnt’ eb constant. I’ve been suffering the dizzy/woozy/drunk/out of it / tinnitus stuff for a year, and others for many years and it’s migraine. Yours might be too

If you haven’t already check out the MAV survival guide http://mvertigo.cloudapp.net/t/vestibular-migraine-survival-guide-2014/2244 there’s lots of good info there and some ideas for lifestyle changes that may help too!

Sorry you have this crap too, but welcome to the forum. Great people here and lots of info and advice :smiley:

Hope you’re not snowed in in southampton
Gabrielle

Thanks Gabrielle
I have printed out and read the MAV survival guide, I think I might take it to my GP to try and convince them
it could be migraine. I’m just so frustrated because I started to feel so much better a month or so ago and then wham! It hit me all over again! I’m finding it really hard to cope knowing that I wake up like this every morning.

I have started the migraine diet but to be honest, I don’t eat most of the foods on there anyway, only maybe one cup of tea in the morning.

The neurologist still wants to look at MS so he is having another look at my MRI scan this week.

We 're not snowed in now, but we were last week, it was quite nice really because my husband couldn’t get to work!

Natasha

Welcome Natasha,

Just read through your symptoms and history and you certainly sound like a dead ringer for MAV. The light sensitivity is a very strong clue. When you take the Survival Guide into the doc make sure you mention that it’s all evidence-based and all of it is supported by the literature or expert opinion even though, for the purposes of a forum post, I didn’t add a reference list. It would be a shame for him not to take you seriously because you printed something off from an internet forum. Actually, I’m thinking I should reference it so that when you guys do print it and take it to a doctor, it’s sorted.

Have you had a look at identifying triggers? You might be able to make significant improvement by doing this alone. Burd, for example, has this under control through trigger avoidance alone.

Best … Scott 8)

Hi Natasha, I have been diagnosed with Vestibular Migraine (MAV) and have constant dizziness in some form and I do not get the big one-sided headache. This all started for me in Feb. 2009 and I am still going through testing to confirm the MAV diagnosis.

When you have these symptoms it is not always easy to figure it out. Usually if they suspect MAV they will try migraine meds but this hasn’t happened in my case yet. If your diagnosis is still in doubt try to find a NeurOTOlogist who specializes in both the ENT and Neurology disciplines.

Following the migraine diet and figuring out your triggers will help a lot until they can help you with meds or as in Burd’s case it may be enough to help you manage whatever is going on. Daily exercise, even though it may cause some dizziness, is also helpful.

Best of luck to you.

Caroline

Hi Natasha,
Migraine can last for months on end in various strengths and the symptoms can shift around, and your symptoms are a classic migraine profile. One can be migrainous and feel fairly well and yet misunderstand symptoms as being from migraine, which is why it is so commonly misdiagnosed as many different things, like eye strain or sinus irritation or allergies. I have been migrainous for years on end in the last 8 years, and have days which I feel fairly well but experience some vague discomfort that I shrug off as non-consequential, and other times of extreme migraine reaction, although I’ve never gotten the stereotypical one-sided headaches. I have experienced many of migraine’s other symptoms, dizziness being most significant or sensitivity to dizziness on better days. This book helped me tremendously…Heal Your Headache, by David Buchholz. He’s a migraine specialist/neurologist that breaks the myths about what migraine is, how to go about taking care of it on a personal level, and when to know to get help. It was my turning point to understanding the true nature of what I have and how to manage it. I got my life back because of that book. I also highly recommend The Migraine Brain, by Caroline Bernstein.

Wow, you’ve all been so helpful. Thank you.

I have just heard that my MRI scan was definitely all normal but the neurologist wants to repeat it and also do some evoked potential tests. I just had a quick look at what that’s all about and it looks like it’s more MS tests. Has anyone got any experience of these tests?

Natasha

Hi Natasha
Sorry you have to go through all of this… we can all relate. I’ve not gone through any MS testing, but that is the reason I’ve had CAT scans and MRI’s done of brain, spine and sinuses in the past three years (my dizziness began three years ago). I think that even MS tends to be a diagnosis of exclusion and isn’t as easy to pinpoint as one would think: they’re usually looking for lesions on the brain area but can also be mistaken about that. I would also follow up on the neurotolarynologist who is a specialist ear nose and throat doctor - and if you didn’t do so, ask to have a complete hearing test plus the full balance testing done. They can test for the eye nystagmus, etc. instead of just going in the direction of MS. Also, I can’t speak for you, but when my seasonal allergies flare I have a much more difficult time of it. Also, great suggestion to get a copy of Heal Your Headache by Dr. David Buchholz… that book pointed me in the right direction as well.
Gail

Could I ask one more question, it’s about the vision issue.

I have problems with my vision when I look to the right, well it’s more when I move my eyes to the right. when I am at my dizziest, my ‘sinus’ pressure is always worse and the one sided vision problem is worse too. Sometimes when I move my eyes to the right, my eye drifts off in another direction. If I turn my head with my eyes it seems ok (if that makes sense!)

Does anyone else get anything similar?

Thank you all again, this website has taught me loads

Natasha

I’m not sure what that is or what causes it, or what it’s actually associated with. However, I’ve read about all sorts of vision/visual irregularities that occur with dizziness migraines. With MM (meniere’s) there is discussion around nystagmus but I’m not sure if that is the same thing. Has the neuro actually run other kinds of tests??
Gail
Another GREAT informational website resource: Dr. Timothy Hain’s website: tchain.com/ Full of info. on both Meniere’s and migraines plus the testing info. as well. One of the thing that works against us is not knowing what/how our bodies are doing…kinda scary and frustrating at times.

Hi Natasha,
Sorry you are going through all of this…my dizziness was constant too for a year and a half after a year of on off.
This site is amazing and everyone can help much more than I can , but yes, I haf weird eye things too , sounds similar to yours…and I did a course of visual traning to get this better although in the end they said this was not migraine related…not so sure, but the training at last stopped the eye wandering off.
Wanted to let you know about Doctor Surenthiran , he is a UK specialist and knows all his migraine stuff really well as well as being an amazing sympatheic man. He got me on track with the diet and meds and I have been really well for over a year now.
He practises at the Kent medway hospital Hospital on the nhs if you can get a referal, and at the Bexley Heath hospital privately.

Hope this may help if you want to try seeing him.Good luck,

Penny

Welcome Natasha,
Most of my stuff is visual related dizzines “Off feeling” or feel a bit drunk or high…for no reason…I found when I looked down it was worse. Over time I ended up getting anxiety/depression/insomnia and had a couple of visual auras (for the first time in my life at 42) and my doctor said it was migraine. I thought it was b.s. since I never had any sort of headache or anything my whole life. I think it’s basically just some mixed up wiring in the brain that they call MAV…there is a plethora of symptoms, as you can see by reading the site…everyone has their own little slice of symptoms…mine are 24/7 and have gotten better with medication, but for a doctor to say it isn’t migraine because it is undending isn’t true. Although I have questioned my dx since it doesn’t make sense a migraine would be going on 2 years now…
it’s all craziness, but meds help…the diet/lifestyle works for many (didn’t for me) and having this site makes you realize you’re not alone in this madness.
You will get better…it really helps when you surrender to some screwed up wiring!! and get a doc who doesn’t look at you like you’re nuts.
Best of luck in getting better!
Kelley

Natasha, I just have to reinforce the information that it is VERY possible to have an long 2-yr. migraine with dizziness…I had dizziness on and off (mostly on) for 3 long years. You just have to get that book Heal Your Headache (I got my used on Amazon) and the author makes that exact point.

(NB from admin: this image links to a product this member has found helpful and at the same time helps fund the site: As an Amazon Associate I earn from qualifying purchases. More recommended products here. Thanks for your support!)

Is it possible to see another neurologist?? I’ve found that doctors are just people, and one is not necessarily as experienced or as knowledgeable as the other. I was at my internist yesterday for my yearly physical and she gave me a rather guilty but confused look when I told her that an allergist referred me to a neuro who ultimately diagnosed me with the migraine variant (includes MAV) and put me on meds which has almost completely controlled the dizziness.
Gail

Welcome Natasha. Sorry you are not well :frowning:

I’ve been sick off and on for 30 years and am starting to get diagnosed with either MaV or anxiety disorder - no one knows yet really. I do know that my triggers that i’ve been tracking are mostly environmental that i can’t control. I’ve been avoiding the major migraine triggers with foods but still looking for other sensitivities.

I had the BAER test (provoked response) test also - i think they check for things that get in the way from your ears to your brain. neuromas (tumors) and stuff - another test different from an MRI. I had an MRI a few years ago and i i sure didn’t want another one - expensive. So i think that’s why my neurologist did it.

I am still holding off on the meds thing until christmas break. i’ started talking to a therapist about my anxiety so that’s basically what he is treating me for but the med would still be basicaly the same (almost) for MaV or anxiety. I am in menopause that is making things worse.

I too am sick for days and months at a time with just a few good days here and there. it’s very strange.

I hope you feel better soon and get some answers and help.

chris

Wow Cookie 42, I have the exact same symptoms as you do. When mine first started I thought I had Labrynthitis and so did my doc. It seemed to go away after about a month and then the symptoms came right back but worse. Interesting that you have the right side vision that is strange. I also have that only on the right side. You’re the first person I’ve seen on here with only the right side vision problem. I’ve seen people with with vision problem, but not right side only. I’m new to this forum but I have been reading the posts here for a while. I’m gonna try to beat this with exercise, sleep and diet. I hope it works. But since our symptoms are extremely similar, I’d like to see what you’re gonna try and do to beat this. I wonder if there is some sort of similar migraine that we have that may be a little different than the others. I don’t know. I’ll let you know if the diet, exercise and regular sleep works. I’ve never had a migraine headache my whole life and still don’t get them now. I’m not looking to just lowering my symptoms, I plan on kicking this thing right out. I’m sure everyone here is too, but I will be working my best to get back to the way I was before all of this. Best of luck to you. Don’t get too discouraged if you have bad days. I notice when I stress out about it too much, my symptoms worsen.

Hi Natasha
I am in Bournemouth not far from you and have/have had many symptoms similar to you. My symptoms became more significant and transferred from migraine with aura to MAV about 10 years ago at 35 and I feel it is hormone linked. I was only diagnosed with MAV by Prof Luxon at the National Neurological Hospital in Queens Square, London in Nov 2008. I have also heard postive things about Dr Surenthiran at Medway Maritime Hospital in Kent (as Penny mentioned)so try to get referred to either of them for a diagnosis as this will give you reassurance and a starting point for recovery. I gather there is a migraine clinic and a balance clinic at Southampton hospital too. There are no specialists here in Bournemouth but I improved with an NHS neuro physio for personalised VRT, low dose meds and lifestyle changes.
Mail me via the forum if you want.
Sian

Hi Beatles909

Have you been diagnosed with MAV? I am still having tests done at the moment but my symptoms seem to match. My dizziness is definitely worse when I am stressed too.

I am trying to keep my stress levels down and also have been really watching what I eat but that doesn’t seem to make much difference.

What exactly are your vision problems like?

My worst symptom at the moment is a tingling face, I’m not sure if it’s connected or not, so I’ve just started another thread to see if anyone else has it.

Yes, I have been diagnosed with MAV. By multiple doctors at the University of Michigan Hospital. I was there for 3 days in their ER cause they really wanted to figure me out.

It's hard to describe sometimes, but it seems that when i turn my head to the right, the vision seems slow to react to my movement.  It makes me more dizzy when I look to the right.  It feels like there is nothing wrong with the left side of my head, but the right side is affected.  Plus when I get a one sided headache, it's alway's on my right side and not the left.  The headaches not that painful though.  I don't see strange images or anything like that when I look to the right.  It just feels like it takes a little longer to focus when I quickly turn to the right.  Although I can focus no problem, really hard to explain.  But I do notice the right side disturbance.  And yes it is worse when I am stressed.

I am also a 31 year father of one child. He is 3. Sometimes I think that the new stresses with a kid and job may have caught up with me and started this whole thing off. I’m not sure, I’ve been trying to figure out why this is happenning to me for a while now.

I don’t have tingling in the face. But last year before I had any dizziness, I had a strange tingling and burning sensation in my left wrist for some reason. Don’t know if MAV had anything to do with that though.

Hi Natasha,

Your symptoms all sound very familiar to me. I too had suspected MS and over the last few years have had two MRIs with that in mind. I also had optic neuritis several years ago which is very highly correlated with MS but, thankfully, those two MRIs confirm that I don’t have MS. I had the VEMP test years ago too, which is was confirmed the optic neuritis (from memory).

Good luck with it all and Ihope you get some answers soon.

Vic

Hi Sian
When this first hit me, and the ENT started talking about MS I got really anxious. A GP prescribed me Temazepam for 4 weeks, but I only took it for 3 and then stopped. My tingling face started a couple of days after I stopped the temazepam. I was wondering if this might have anything to do with my tingling face? Although I have had it in and off for 3 months?
Natasha