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.