Hi. I’m new hear. Have been on loads of other sites and one v. useful person on HealthBoards suggested that all my symptoms sounded like Vestibular Migraine. I had thought about this too…but wondered if anybody here could comment.
Basic background:
mid August had SUDDEN attack of right/hand side head/brain blur/numb/fade out whilst walking into house. Head felt as though weighted to right side, listing like carrying heavy iron! No loss of feeling/speech etc but felt like feelings that might preceed fainting. Gradually went off over about 10 mins but felt weak and worried afterwards.
visited GP who suggested may be inner ear virus and did basic tests looking for eye movement. No response and balance great, no sign of stroke, tumour that he could see.
over next two weeks increasing amount of dizziness - NOT VERTIGO, at least not how people have described vertigo. Dizziness felt a bit like when looking at something, the vision space would slip to one side and then move around a bit, or suddenly reverse (like the scene in Jaws - reverse zoom dolly or something). Very frightening. Lots of sweats at night…but I am also perimenoupausal so…and hearing began to be very fogged…but I could still actually hear…very stressed too.
major panic attack sent me to A and E. The doc. said it was hyperventilation and told me to see GP next day…who referred me to see Community Psychiatric assessor for probable anxiety disorder.
signed off work for a week
dizziness and general awful feeling of malaise persisted, ears full on and off but more so on right hand side, some feeling of pressure and tinnitus/rushing/roaring/fluttering
some sense of vision being too “sharp” on r/h side…not blurred…some light haloing…look at a bright light and look away and still see the outline of the object
after 2 weeks GP kindly got me referral to see ENT consultant who did another gamut of tests including hearing test but no sign of any inner ear infection. Referred me for MRI as routine. This is due on Oct 15th
dizziness continued on and off. Some days would be just about OK, but some days would be miserable. Convinced I had tumour or somthing.
had a weird attack of r/h side ultra brightness/imbalance in Tescos shopping with son when we took him to start Uni. This went off after about 10 mins and I felt OK for a few hours
other symptoms that come and go include: legs feel not associated with body (I could easily sit down if someone gave me a chair in the street), brain blur, inability to concentrate sometimes, palpitations, morning dizziness (waking up dizzy), dizzy dreams waking me up, nausea but no vomiting
I have had only a couple of headaches through all this…tension type…one lasted 3 days.
I do get migraine about 2 or 3 times a year and this generally is appalling - lays me out for hours with vomiting and upset stomach and incredible pain.
Would MAV come on so suddenly do you think??? Does it generally make people feel a general unwellness for a lot of the time?
And finally (sorry to ramble on :oops: ) if anybody is in the UK…particularly in East Anglia area - can you suggest a specialist neurologist that I could mention to my GP? I should also add that he has been great, and has tested for loads of things but is as confused as me. He has referred me to see a general medi.consultant next week but if this is MAV I fear that the general medicine consultant may well not be familiar…??? How does one then go back to GP and say politely “Can you get me to see…?”
I have been off work for 5 weeks now…waiting to see if this is a virus that is just going to clear up. But if it isn’t…and it is MAV…I must start finding ways of dealing with it and get back to work…worrying thought.
Certainly all the symptoms you describe can be a result of migraine and there is really not much else in the way of other conditions to consider with those symptoms. Your history of migraine adds to this likelihood as well.
I don’t know where she is located in the UK, but someone else here may be able to help - Dr Rosalyn Davies often comes highly recommended as a neurotologist. She is very familiar with migraine.
Treatment is often very successful, so don’t give up hope!
I have battled with most all of your symptoms at one time or another. With the exception of nausea and headaches. ( In the past year or so, I have begun developing headaches, but not severe). So, you are not alone.
Hang in there, it can be very trying to get a diagnosis. It can be a long, miserable journey going through all the tests and procedures to rule all the other bad stuff out, but don’t give up.
Hi Ali
Sorry you are having such a bad time at the moment try not to get your self stressed out as it dosent help i know its hard not to . Any was i was wondering what meds you are on i take Betahystine 16mg 3 a day i was atending ent at chasefarm hosp and was eventually sent to see a consultant at st anns hosp in north london where i had some tests done have you had a balance test done thats where they flush water in your ears any way you have to ask lods of questions write them down so as you remember them and make sure they explain everything to you so that you understand the answers . When i was told i have MAV i just kept saying but i dont get migrains or headaches i was lived with her for not explaining it to me properly so hang in there PS i live in the UK and log on every day so i am always around if you want to let of steam
best wishes janet
Just read replies to my post…late…for some reason could not get to this site for a few days.
thanks for the support and information.
I am so confused as to what I may be suffering from…one minute I am convinced it is MAV and then I think, no, it must be vestibular neuronitis.
The frustration is not yet having any sort of diagnosis or suggestion…after 8 weeks. Must be more patient :?
Janet - good to hear from a UK sufferer too. No, I’ve not had the tests you mention and this is part of my frustration. GP and ENT consultant both did simple dix Hallpike test (head back on couch, turn head to side etc).
I am seeing a General Medical consultant at Hinchingbrooke Hospital on Thursday and have an MRI on Monday. Not sure if the Gen Med person will be able to help though…not specialist in this area, but hoping that perhaps they have seen similar cases and referred them on to neurology at Addenbrookes. That will be my next request to my GP if nothing comes up from MRI or Gen Med consultation. I know that there are some really good neurotologists based at Addenbrookes, and a Audiovestibular centre where the Head of dept. has just spent time in USA with Timonthy Haines so is clearly up to speed on various dizzy problems! However…I suspect that the waiting list is…long The neurotolgists do also operate privately…but goodness knows what the costs are for that.
Today I woke up at 5.30am feeling really nauseous, was not sick, but when I did get up, felt just like I did 8 weeks ago…complete disorientation of right-hand side, weird spaced out head feeling and very very slight headache. After about 4 hours or so it began to resolve and now, at 7.00pm, I just feel my “normal” woozy-self! does that sound like MAV???
do you ever feel…normal? and would MAV hit suddenly with a first sudden attack, which is what happened to me? (I should say that I am a migraine sufferer generally…about 2 a year classic hideous painful things, vomiting etc etc).
It’s hard to hear about your suffering - i NEVER feel normal. And mine did hit suddenly - kind of - there were some minor symptoms over a few months before the big one hit and I’ve been dizzy ever since. It has only gotten worse over the last 3 years and I finally have been diagnosed with vestibular migraine. The local docs all looked at me like i was a freak and didn’t know what to do with me. I had to get to a super specialist who knew pretty quick and started me on treatment.
Good luck getting through this maze of docs and tests and then the maze of effective treatments.
I wish you the best of luck in getting your life back and I thank Adam again for this forum - so that we CAN vent!
I’m also in the Uk and like you to date have had no clear diagnosis in 11 years! I’ve had several possibles - labyrinthitis, vestibular neuronitis, benign positional vertigo, Meniere’s, possible Mav. I am also a regular on the MDUK forum - not sure if you’ve looked in. I saw a neurologist a couple of years ago and he told me the dizziness was something I would just have to live with. He said I could try some migraine treatment but wasn’t completely convinced that it was a migraine problem and left me to think about it. As I’ve been confused along the way too, I thought I’d leave the meds and see how things went. So now I just suffer the symptoms and take nothing except the occasional painkiller when the headaches are too much.
I started completely out of the blue with a vertigo attack which woke me from sleep one night. Prior to that I’d had a few ‘turns’ at work, where I felt like everything drained from me - like someone pulling a plug & like I might be about to faint. I still have occasional vertigo attacks - no vomiting thank goodness - and loss of balance usually on my left side. Most of my days are taken up with general dizziness, imbalance, slight to moderate headaches (with the occasional really bad one thrown in for luck!). Like you I have the halo effect from bright lights - I still see the outline of the light’s shape for minutes afterwards but I thought everyone has that!
My mum had lots of headaches in perimenopause and my sister has occasional migraines with loss of feeling on one side of her body - I think this might be basilar migraine. Ihaven’t been able to work for about 5 years - I was retired on medical grounds. I just couldn’t carry on nursing.
Try to get to see someone good - I paid privately several yrs ago to see someone at the Leicester Balance Clinic - who said not Meniere’s & not sure what! I’ve kind of given up trying to get a diagnosis and now I just have an annual ENT appt. Next time I go I will mention MAV again and see what they say. My picture tends to be coloured by having several family members with dizziness & balance problems which have been diagnosed as Meniere’s - not sure if it is or not. I don’t have hearing loss and never have developed it in 11 yrs.
By the way I’ve had all the tests (MRI, calorics, computerised posutography). The only one that showed anything abnormal was the computerised posturography (the one they use at NASA for astronauts) at Leicester, which showed I had a problem with balance.
I hope you get some answers and something that works for you.
The neurotolgists do also operate privately…but goodness knows what the costs are for that.