My Story in detail - on the hunt for answers

Hi all

I have two appointments in two weeks - I am travelling from South Australia to Sydney for them (via car as I have severe motion issues on planes.)

I wrote a very detailled list of symptoms and history for the docs as I am completely at my wits end and hope this helps them with a diagnosis.

So far I have had two ‘possible diagnosis.’ The first one vestibular hydrops (due to symptoms following my menstural cycle) without hearing loss, fullness in ears, tinnitus or hearing loss (I can’t even find such a diagnosis example online.) The second vestibular migraine. I am currently on 1mg of pitzotifen (have been on 0.5mg for one week ) and 1mg for two days. I am currently in the middle of an episode so I hope they may still work and this isnt a bad sign.

I thought I’d share my history and see if anything sounds familiar or rings true for anyone else. Also, after my appointments I will report back here and maybe thsi will help others in the future.

Thank you for reading.

My Story…

My Dizzy spells started around age 13 - 14. These spells have remained relatively unchanged to this day. I am now 30. They have a significant impact on my life.

The dizzy and vertigo spells :

Varies from spells that come on suddenly with no known trigger ( can be watching tv, sitting at dinner table etc) and suddenly feel like I am being pulled to one side. Strong sensation and includes a distinct 'head swimming ’ disoriented feeling also. I generally have to remain still for a few minutes and they pass. I can continue what I was doing after this and may just feel a bit off balance.

I also get what I call attacks. These usually became apparent upon waking in the night or early morning although i recall one starting at midday. I notice something is wrong when I turn in bed and become very swimmy and dizzy. If I sit up it continues and only settles until I move my head again. This is usually the start of a minimum of 2 to 5 days of the following:

A strong sensation of falling through my pillow, pulling, flipping, floating and heavy swimming in my head if I try to lie back. I have to use many pillows and lay back slowly and wait for the feeling to subside. In the first two to three days, turning my head makes it start and and lying on my side is usually impossible. Once I have laid down for a while it settles if I don’t move much but as soon as I get up to go to the bathroom etc, my head swims and feels dizzy until settling again. I walk slowly and can’t move my head much without setting it off again. Once i have been up for a few minutes, its very hard to lay back down again. During the first two to three days, sleeping is very hard as lying down is awful and when i close my eyes its like i cant work out where i am in space and i am falling backwards etc. i can usually walk unaided, although feel terrible and i have never vomited. Sometimes specific head movements such as looking up and to the side , looking down etc are the last to settle as symptoms improve. I feel i’ll fall backwards if i look up at times. Its a very strong dizzy sensation. Lying flat on my back or ears usually takes at least 5-7 days without provoking the swimmy dizzy sensation.

I find that day two can even feel worse than the onset at times. My vision bounces and I feel almost cross eyed and like my eyes slip off the object if I try to stare at it during an attack. I have to keep trying to refocus as they move across and won’t stay centre. This resolves within 3 or so days. Looking around too much when walking sets it off more.

Sometimes on day three or so I get pressure feeling in my head. Almost a hangover feeling.

Other than the spells and attacks I sometimes have days randomly that I feel off balance or like my world looks tilted. I feel like veering when walking. These days don’t stop me getting on with usual activities.

A PATTERN WITH ATTACKS

In the last 12 months I started to keep a journal in desperation! I quickly noticed that Attacks follow my menstural cycle as per below. I have PCOS and my periods are irregular.

Period Jan 9th
Spell being pulled on one side on Jan 8th.

Period 16 th Feb
Spell being pulled to one side on 14 th Feb

Period 24 th March
Bad attack , middle of night 27 th March.
Symptoms last three days followed by hangover pressure front of head.

Period 17th May
Attack 15th May. Worst lasted 4 days. Back to work on day 6.

Period June 23rd
Headache only.

Period 9th August
No symptoms except slight imbalance.

Period 25th Sep
No symptoms recorded

Period 1st November
2nd November terrible headache, hard to drive home. Neck also became stiff to turn head, made headache worse.
3rd November went to wrk and came home exhausted and feel asleep to wake up to vertigo. No real improvement for four days. Provoked by position changes and movement generally. Slept on six pillows. Saw doctor, said no nystagmus even though had vertigo in positions. Had to take week off work. Couldn’t function.

SAW dr Tomich after this and put me on sandiomigran. He said he thought hydrops due to cycle pattern but no nystagmus during attack, no fullness in ears, ear test ok, no hearing loss or tinnitus with any attacks.

Attack:
Two days after starting Sandimigran .5 mg - went to bed. Went to bathroom in night. When going from light in bathroom to dark noticed strobe flashing for about 10 seconds in vision - then faded. Went to sleep. Woke up 5 am with the vertigo again. Typical attack, provoked by movement, head positions, can’t lie down, then horrible getting back up etc. can walk unaided. Saw dr tomich ENT 6 hours after onset. He again tested positions that bought on feelings of falling, falling back off bed, heavy swimming- no nystagmus. Also tested hearing- all ok.

Period was early and started 4 days later.

Prior to keeping my journal, I remember one of my worst attacks - I went to bed with a headache and woke up with vertigo. Vertigo lasted over a week with movements. Period came on around day 3 or 4. I can’t recall exactly. This is one of the only times I specifically recall a headache prior.

OTHER SYMPTOMS

I have noticed I get a lot of dull headaches all the time. I was asked if I get migraine. I have never considered them bad enough although over the years I have had a handful of pounding headaches. Only once have I felt the need to stay away from light though.

When 15 I suddenly lost half vision and saw rainbow colors. Lasted about 40 mins. Fell asleep. Never got headache. Have never had this again. I also recall about 20 mins of double vision at the end of an exam once. I don’t consider myself a migraine sufferer and these episodes are few and far between.

In my teenage years I always used to get a black flicker of light. Lasted a split second and was always asking " if someone just flicked the light." saw lots of docs and they put it down to lacking B vitamin. Sometimes still get this.

There have been two occasions is in the last two years that at work I have seen a blur and shimmering in the side of my vision for about 20 mins. Didn’t take much notice until I have been prompted with migraine questions! I don’t ever recall having this before.

After swimming I feel really off balance. After exercise I get a swimmy head for a few mins although when going to gym regularly I believe I got less ‘attacks.’

I don’t get car sick but can’t tolerate the up and down motion of large boats, elevators or planes. The sinking sensation seems so heightened and makes me dizzy and disoriented. I also have a great deal of bouncing after I get out a lift or plane ( as if I’m still on it.) I get this after long car rides also. I took Valium to fly to Europe ( on docs instruction to sedate inner ear) but still felt I was dropping through floor, very disoriented and sick. ) I felt movement two days after getting off plane.) Even after going in an elevator , the floor bounces under me for a minute or so!

Desperately want to travel but makes me feel awful! Yet car ok? I can even read in car. Put me on a large boat, ferry or plane and I feel terrible sensations in my head. This impacts my life greatly.

TESTS I HAVE HAD :

MRI - all ok

BAER - all ok

VEMP - all ok

Hearing tests x 3 - all ok including one 5 hours into an attack.

Eng - ok but didn’t do caloric ( can’t bring myself to do it as I know how I react simply with water in my ear after a swim.)

THINGS I AM REGULARLY ASKED:

Do I get tinnitus, pressure or fullness in my ears : No

Do I have migraine in my family : yes. My dad gets abdominal migraine ( since a child) and his parents ( my nan and pop) both suffered migraine. My Nanna’s mum also suffered debilitating migraine.

Do my headaches exist with my vertigo: Not really. Only twice do I recall having a headache directly prior to onset. Although I get a lot of dull headaches and pressure feelings in my head. Almost weekly. These dont disrupt day to day. A few I have had have been bad in my lifetime, a few times i have had quick stabbing head pain but not with vertigo. Also not with light sensitivity? So didn’t consider migraine. I get a lot of dull headaches but vertigo is what disrupts my life.

LASTLY :

Strangely enough, when I dye my hair , about 15 mins after putting colour on my head, I get a severe swimmy feeling , dizzy. Until washed out. Not sure if smell could trigger? Very strange and I can’t figure it out!

Often go through random periods of not being able to lie flat on ears without promoting the swimming sensation. Ok on pillows but not flat. The sensation doesn’t change even if I keep my head in the position. This can last weeks. Then just goes away? I have been tested for bppv during this period - never positive. They can’t see any eye movement although I feel the sensations flat on my ear.

I sometimes randomly get stabbing deep ear pain on one side.

Sometimes particular outdoor areas make me feel off balance and disoriented such as looking at conflicting inclines ( in the hills) or coming down a closed in escalator ( if I close my eyes it is ok.) as if there is a conflict? Makes me feel very disoriented.

Thank you for reading.

I can say yes to everything you posted except being pulled to one side which now that I think of it, could have been a short lived symptom for a little while. I have everything you have and my dizziness and vertigo and symptoms change and manifest into others and cause me anxiety and panic attacks. It sounds like you have MAV. I have those headaches too where they are dull but advil or tylenol won’t get rid of them so I know it is Migraine.
I used to get dizzy and vertigo with no headache but now I notice within 30 min or so I do get a mild headace after an attack. I have been suffering 5 years and went to every doctor, thought I had MS, fibromyalgia, brain tumor, cancer, post tubal ligation syndrome, you name it, I went to get checked for it. I always thought I felt like I was gonna pass out and finally I realized that it was vertigo and dizziness! Do you know when I figured that out? When I had the caloric and shot water in my ears to evoke dizziness. After that horrible test I had a short vertigo (10 seconds) attack and the first thing I said was “Wow! THat’s how I felt during the caloric!”

Then all hell broke loose last September. I woke up and rolled over and everything was spinning! I went to the ER. My ENT thought I had Meniere’s or Labrynthitis. Two weeks after that attack I was just laying in my daughters room and didn’t even move and started spinning! That took 6 weeks to recover from. All of this happened during an entire house remodel where we gutted the kitchen and didn’t even have a microwave for 3 months! I ate nothing but fast food. I finally found a Neurotologist who told me he would get me better. I had a positive ECOG and VEMP test and had high fluid pressure (hydrops) in one ear and very high in the other. He told me that I had been suffering from MAV the whole time and the remode and eating habbits made it worse and that sometimes it takes a long time to recover. He told me that MAV does that. It can be years where you have these “odd” feelings or feeling “off” and ususally there will be some kind of “attack” that puts you totaly out. He told me that I would get better and put me on a low dose of Verapamil. I did feel better. I followed the diet and had one of the most stressfull years of my life (sick parent, got divorced, found my true love, it goes on and on) and still felt good.

Well, all hell broke loose in October after having dental work with lots of drilling. They thought it gave me BBPV but tested negative and trying to increase Verapamil. Same thing, same time of year and it just dawned on me. I get sick from the wet weather. I live in Oregon and just started tracking barometric pressure and am convinced it has something to do with it. By the way, I have felt hungover for 5 years. And yes, around my period is the worst. I do not drink alcohol anymore and try and follow the MAV diet. While you are waiting for your appointments buy the book called Heal Your headache by Dr. David Bucholwitz. Makes so much sense. My doctor also told me MAV symptoms change. It’s a horrible problem and I hope you get help. I’m not in a real positve place with this right now and my new love is moving to be with me and I am so depressed because I am so freaking dizzy. Who wants to be with someone like this? Good luck at your appointments and remember, you are not alone!

Hi AG,

Thanks for posting your story. Could I ask you a favour? Would you mind copying and pasting your story in to the sticky post above titled, “Post Your Story” as well? It wasn’t there when you posted this one so you wouldn’t have seen it. Moved it back to it’s home again above.

S 8)

AG

I understand u will b seeing cremer and granot both. Based on your symptoms chances r that u will be diagnosed with MAV by both. However with cremer do not mention that u suffer from anxiety otherwise he may even consider diagnosing u with psycho physiological dizziness. Regardless of whatever diagnosis u get, anti depressents treat both disorders so cremer will most likely prescribe effexor if he diagnoses u with pycho physiological dizziness.The good thing about seeing 2 specialists at the same time is that u can get reconfirmation that your diagnosis is correct. The Bad thing about visiting 2 specialists at the same time is that each specialist has their own favourite meds with which they have had most success with. this could lead to confusion on your part as to which medicine to start on. If migraine is what u have, granot will most likely get u to stick to pizotifen for 2 months before getting u to change meds.Anyway I am no doctor but I can atleast let u know what to expect from both doctors since I have experienced both. It would b interesting to see what cremer diagnosis u with if u do not have anxiety

Aussiegirl,

Based on what you have written I’d say you are definitely a migraineur. I’d put money on it. It’s text book really, an open and shut text book.

I doubt whether you have any other issues (e.g hydrops). Again, I’d put money on it.

Looking forward to hearing what the experts say!

Vic

Thanks guys.

Sorry, I know that was the looooongest story ever but since I wrote it for the Docs, thought I’d post it here.

Your confidence in my diagnosis makes me even more confident again. Vic …I hope you are right :slight_smile: I also appreciate your positivity. Surely with all that info the ‘specialists’ can give me an answer! I think the reason that I find it hard to believe that it’s that simple is my 15 years of absolutely no help or answers…except for “maybe see a psychologist to help you when you panic about it.” Either the info given to the docs like this will help them or they’ll think I’m a bit crazy for writing it and they’ll put me in the ‘head case’ pile!

Nabeel, thank you for sharing your specialist experiences. I agree with all you say and my money’s on Granot. I appreciate the insight though and Im glad you found a doc who scraped the ‘psych’ diagnosis and actually gave you the help you needed and deserved.

Leshurd, It sounds like you have had a really rough time and I really feel your pain. I wouldnt worry about being dizzy with your partner moving in. I know the feeling re not wanting to be a burden and being upset that you can’t just enjoy this time etc but really they are with you because they love and care for you despite the challenges. If you imagine the roles reversed, I am sure you would still be there for them. I am also certain you will share better days. I hope you can get your symptoms under control with meds. It seems like a real case of trial and error with meds. Keep us posted and thanks for the reply.

Nicole.

Hi Nicole,
It’s great you were able to write such a detailed history - after so many years of misdiagnosis i can understand that you want to cover all bases. You’ll find Dr Granot a very kind & caring doctor & certainly won’t make you feel like a 'head case"!! We’ll all be waiting to hear your report from the two docs.
Hope you get through the long journey OK - amazing you can read in the car. I’ve never been able to read while on bus/train/car - guaranteed to make me throw up! Hopefully, you can sleep in the car -
Barb

— Begin quote from "Aussiegirl1982"

Vic …I hope you are right :slight_smile: I also appreciate your positivity. Surely with all that info the ‘specialists’ can give me an answer! I think the reason that I find it hard to believe that it’s that simple is my 15 years of absolutely no help or answers.
Nicole.

— End quote

Hey Nicole,

Sadly, this is all too frequent - most of us have travelled the same road - if not a psych (mis)diagnosis then the labrynthitis, BPPV, vestibular neuritis etc etc etc. In my case this was from docs who already knew I was a migraineur. :cry:

Given the huge prevalence of migraine in the population this is a really unfortunate and unacceptable state of affairs, not just among GPs but some neurologists and ENTs as well. The medical profession need to start getting educated beyond their narrow understanding of migraine being a ‘nasty headache’.

Vic

Nicole

plz update us about both your visits to the 2 specialists

Good luck Nicole. Your history very much sounds like migraine to me. I am no expert but it’s so frustrating that all these doctors don’t pick up on this much quicker x

Thanks.everyone. I appreciate the support. Only a week and a half until my apt! Amazing what excites us lol. Vic, you are so right. I keep imagining if I finally get a diagnosis and I am treated, I would walk into the rooms of all of the doctors who misdiagnosed me and tell them what they missed! Would give such satisfaction. Makes me quite angry!

Hello,

Just to say I second what Vic says, to a fellow MAVer it’s very obvious that’s what you have.

With a family history of migraine like that, and your symptoms, I’d bet all my money on it.

H

Hi Aussiegirl,

I am an Aussie girl too! and found lots of similarities in your story… no headaches to really complain about…but I had one episode of a visual migraine (scotoma wiggly lines and tunnel vision - but again no headache, about a year ago - none previous - none since). Mostly my symptoms are constant dizziness, oscillopsia, terrible balance, can’t walk straight in the dark or without a rail to hold, brain fog, all symptoms worsening around my period and then again around mid month! rarely get to the crawling along the floor stage now - but I have done, and have had attacks of severe vertigo and with nystagmus that cause vomiting. All started 8 years ago with a mild episode of dizziness that came on each day at 5pm and lasted 2 hours - then a week later is lasted all night and then it stayed for weeks on end… and here I am 8 years later. Although I did have 2 years in that time that I thought I was “fixed” - only the odd short-lived vertigo sensation for 2-3 minutes 2-3 times a year!!! but its been back almost daily for a year now. And for the life of me I can’t work out what has changed…??

MRI - clear (2 two years apart)

had trouble with the vemp/vng because apparently my ear cannals are too tiny and twisting for the smallest probe… but had calorics and what results they did manage were indicative of some kind of vestibular pathology - been diagnosed with BBPV (which I feel is occasionally accurate if I get a head position attack- but the particle maeourvering never worked) then MM - no amount of food restrictions helped - and now ?vestibular migraine … along the way i’ve had chiropractic, accupunture, homeopathic, and massage, tai chi, yoga (which i maintain for lots of good reasons) and I read Scott’s info on magnesium so I take that anyway (thanks Scott for ALL your input here) and I’m back on serc (no side effects - may as well take whatever I can)

Oh I also did some vestibular rehab - no help at all - I’ve spent a fortune on this… :slight_smile:

Tried topamax but didn’t like it - gave it two weeks ( am tempted now I’m on leave to do it again for longer…)
currently on 2nd month of Ami - seemed good for three weeks (i rate my dizziness/vertigo levels from 0 to 10 which is incapacitating, true rotational vertigo where I can’t open my eyes or move, and usually end up vomiting) - so for three weeks I considered it a success sitting around 2-3 - but for the last three weeks its been between 5-8 so I think its not really doing the job - and i feel SOOOO hungover on just 20mg that I take at 2pm… BTW can anyone explain why drugs with onset times of 1-4 hours and half lives of 8 - 40 hours can take MONTHS to be effective???

that’s me so far - i hope bits of my story are useful to you and others. I find it helpful to remember I had two years “straight” - keeps my hopes up.

Good luck with the road trip Aussiegirl - that’s a long way and I hope you get the help you’re after.
Very best wishes.