Hi all, I'm new to this forum and found a lot of the threads most interesting. Any advice/suggestions/comments on my ongoing condition would be really welcome.
About 8 weeks ago I had a sudden....and I mean sudden....attack of weird right-hand side of head ...numbness/blurring/light-headed sensation....the sort of feeling you get before you might faint...but only on r/h side of head. Head felt weighted to that side. This happened whilst walking through room at home to kitchen. No loss of sight/no loss of balance or hearing but it was v.frightening. I sat down for 10 mins and it gradually went off. Went to GP next day, who suspected Lab. but looked at eyes etc, made me do balance tests and thought not. No sign of tumour/stroke. Anyway, over the next 2 weeks I got progressively more episodes of giddiness/dizziness/sense of everything rushing towards me or that I was walking on uneven surface and generally felt really unwell. No temperature though. Eventually had major panic attack and ended up in local emergency wing where doc. said my symptoms were all panic attack linked and to see GP for anxiety counselling. Aaagh. Of course I was anxious....I had no idea why dizziness etc kept on and on. My GP was actually very good and after signing me off work (now in 5th week) managed to get me a referral to an ENT consultant. She ran a gamut of tests and sent me for a hearing test. All clear. Referred for routine MRI which is due in a week. GP again very understanding but baffled and I have an appt. to see a General Medicine consultant next week. My symptoms change daily but generally I feel unwell a lot of the time, have varying degress of fullness in ears but predominantly r/h side, pricking/stabbing in r/h ear and feeling of gland up underneath ear, hurts to swallow on r/h side, I did have some tinnitus (roaring spasm/flutterings like a moth trapped) and did have a very hot right ear at one point, a lot of imbalance feelings and varying degrees of nausea, some sensitivity to light esp. when looking away from a bright screen or window (halo effect). I have been blood tested for lack of iron etc etc, my thyroid is managed with 100g thyroxine (last 7 years), blood pressure v. low but always has been. Before all this I was an active person, running 3 x a week and running a stressful customer rleations team call centre. Have seen a cranial osteopath who said there was a lot of tension showing and have suggested TMJ problem (had bad time at dentist in January)....but could TMJ make me feel unwell with no temperature?

sorry to ramble on....but that's what this ...whatever it is...seems to be doing! :mad:

Any advice?????:confused:

It is so interesting (and sad) that our stories are all so similar. Ali, you will read stories on this board that sound almost exactly like yours. Mine is very similar, and to this day I do not know an exact diagnosis and neither do alot of people. It is very frustrating you will find, but you will also find some great support in here and also the bottom line fact that eventually you will get better. I know that is not all that comforting because we all like a time-table on recovery. But so far, with this illness, whatever it is, there usually isn't one clear cut method to it's madness.

Do alot of reading and keep up the research. Try not to get too discouraged with all of the many doctors you will see who do not know how to help you. I think they are in the dark almost as much as WE are when it comes to this bizarre dizziness.

Keep looking into the possible causes/treatments of Labyrinthitis, BPPV, Vestibular Neuronitis, Migraine, Hormone Imbalance, Allergies, TMJ - but try not to drive yourself too crazy! Just know that we on this board won't think you are nuts - we totally understand everything you are saying. Most of us believe that we aren't dizzy because of anxiety, but rather anxious because we are dizzy! The docs always get that one wrong.

What Missy said.

Don't let the doctors send you away with anxiety meds. They love to do that. For many of us, the dizziness has caused anxiety problems, and I do believe in taking something for it when necessary. It'll just hinder your progress otherwise.

But first they need to figure out what's wrong with you, and treat you for that. Bug them, annoy them, find other doctors if you have to, get yourself referred to specialists if possible. It might take a while to figure out exactly what's wrong, or even just to come up with a "most likely" diagnosis. It's frustrating sometimes. A lot of times.

And like Missy said, do your own research. You know how you feel better than anyone else. Read as much as you can. It'll help you explain to your doctors which symptoms you have and, just as importantly, which you don't have.

Good luck and hope you feel better!!

Hello,

Don't worry you will be able to get help you just need to know the right place to look. A lot of people on this board are initially fobbed off with an anxiety diagnosis, these dizzy conditions make people very anxious and to people who haven't got the conditions or doctors who aren't educated about dizzy disorders the symptoms can sound similiar to anxiety. I had two anxiety diagnosies before I found a specialist who understood what I was going through and diagnosed me. Most doctors know nothing about dizziness.

Generally speaking the people on this board with symptoms close to yours fall into three diagnositic categories - BPPV - which it doesn't sound like you have as there are very specific signs which you haven't mentioned - Vestibular Neuritis also knowns as labyrinthitis and another condition called vestibular migraine also known as migraine associated vertigo. This is an atypical form of migraine that often (in fact generally) doesn't manifest as headache but causes symptoms very similiar to labyrinthitis.

If I had to hazard an educated guess you have the last option - MAV aka vestibular migraine. THe reasons for this are because you describe your initial attack as right sided - migraine can often - not always present as a one sided problem. Also, and most importantly because you describe sensitivity to light - a classic migraine sign which never happens when people have labyrinthitis. The numbness could also be an indicator. I have MAV and much of what you say sounds familiar to me. It is a condition about which many doctors, actually make that most doctors, are totally ignorant. People are generally sent off to an ENT when they are dizzy but what is little known is that ENTs are not inner ear/dizzy specialists - they are middle/outer ear/nose and throat specialists and often fail to help people. Often leaving them feeling desperate and like there's nowhere to turn.

I notice you are in the UK. A lot of people on these boards end up seeing a specialist called a neuro otologist (different from a neurologist) they do 4 further years training on top of ENT training in to the inner ear and dizzy disorders. Many people from the uk have been seen at the neurotology department at The National Hospital of Neurology in London. The person to be referred to is a Dr Rosalyn Davies - one of the chief neurotologists there. They won't be baffled by your symptoms at all. They see patients with your symptoms all day and will give you a diagnosis and a treatment plan. If it is, as I suspect, vestibular migraine, they can put you on a daily migraine preventative which can, if you get lucky with the right drug, control the symptoms.

You mention dental work and discomfort on one side of your throat. A lot of people I have met with vestibular migraine also have clenching/grinding/tmj type issues. They frequently have both conditions going on at once. Tmj can act as a migraine trigger. My guess is you may have kicked this off with the difficult dental work in January. Although the cranial osteo was on to something with the tmj, it definitely wouldn't explain the dizziness/vertigo - tmj never causes that. Often people fail to understand how the two conditions interact. You may need to get a mouthguard to wear at night, it's entirely possible you clench or grind your teeth without realising it. Stretching exercises for the jaw/neck are also immensely helpful if you do them every day.

I suffer from both tmj and vestibular migraine but it took a long time to get to the right specialists and really understand what was going on. My intial diagnosis was tmj, then labyrinthtis, and then Neurotology eventually diagnosed me with MAV and now I am also seen in the same hospital under a neurologist. The latter are often the best people to manage the condition, although it's best to see neurotology first as they are best at diagnosing which dizzy disorder you have. I've written a long post to save you the horror I went through of being passed from pillar to post. Very few doctors outside of certain neurologists and neurotologists will have a clue about these disorders and they almost certainly won't know what vestibular migraine is. Many people with vestibular migraine are initially misdiagnosed with vestibular neuritis/labyrinthtis. I should stress that people with vestibular migraine can never have experienced an actual headache. It is a common misunderstanding that migraine always manifests as headache, it doesn't, It can manifest in many different ways.

Obviously I'm not a doctor, vestibular migraine is my very strong hunch, neurotology will be able to shed more light on what's going on. I forgot to say that my GP was able to refer me on the NHS. I'm not sure of the rules but I know in my case she mentioned that I could go out of my catchment area because the 2! ENTs I'd seen had failed to come up with an adequate diagnosis beyond anxiety. As your GP is being helpful I am hoping she could refer you with little fuss. Bear in mind that my GP didn't even know what a neurotologist was until I told her. It is a super speciality - namely quite rare. Failing that they can't refuse to refer you privately if you are able to pay.

I hope this helps,

best,

Many thanks for all the information. I'm seeing a general consultant next Thursday and will definitely mention vestibular migraine possibility and thanks for the information about the neurotologist. Again, if no joy with where I am currently going, then I will definitely mention to the GP re: referral.
Thanks again. Really helpful :)

...just thinking along the vestibular migraine route again....is it possible that these would come on suddenly and keep me off work for so long? I should say that I do suffer from migraine - about 2 a year maybe that completely lay me out, incredible pain nausea and vomiting. However, I have not had any signficant headache pain with all this - although one tension like headache when this all kicked off that lasted about 3 days before melting away. Would vestibular migraine happen really really regularly over days and days? I do not have the classic vertigo that many people describe, but a general sense of imbalance and some degree of sick feeling although not actually sick.
...Example: I woke up this morning feeling nauseous. Had to visit the GP for yet another blood test and felt really unbalanced on the right-hand side and as though my right-hand perceptions were all "sharper" but not in a pleasant way. Legs felt tired. If somebody had given me a chair to sit on as I walked to GPs I would have sat down! Ear on r/h side felt fullish and generally felt weird. This also happened a couple of weeks ago when shopping in Tescos. With the latter event, it passed off after about 10 mins and I actually felt relatively OK afterwards. With this mornings episode it seems to be lasting, although I did feel OK having a conversation in village shop, but not completely real. I have no headache. that is what confuses me when we mention "migraine"........
....I live near a very large teaching hospital so am hoping that my GP, if my next general med. consultation comes back with no clues, could refer me to the neurology clinic there. There is a neurotology clinic but they appear to specialise in acoustic neuromas and skull based trauma problems. I doubt that, given the hospital is so large and extensive, that my GP would refer me to the London College which is a shame as it would be good to see Dr Davies. Did think about going private, but the costs are prohibitive.

Hi,

Most people when you mention migraine in relation to these type of symptoms come back with that question. Migraine is an expansion and contraction of blood vessels - the most commonly known - by the general public - way in which this manifests is as headache. However that is not the only way people get migraine, some only get visual symptoms for example. Others, like me - only get the dizziness.

Another common misconception is that MAV is intermittent - that you get attacks - this can happen but is not the only way it presents. In fact the majority of people who have been on these boards with MAV have had continuous 24/7 symptoms that mimic vestibular neuritis. I was initially diagnosed with VN until I didn't respond to the treatment for that and then they changed my diagnosis to migraine. Later on in my illness I developed severe light sensitivity at which point it became completely clear I was suffering from MAV not VN. My symptoms when they happen are continuous - I have just been in a 8 wk relapse, no let up, day in day out. However to give you hope for the year and half prior to this I responded extremely well to migraine preventatives and was free of symptoms.

Migraine can also change in the way it manifests over a life time. Like you, a friend of mine who had MAV, now cured with preventatives, had about two migraine headaches a year prior to it suddenly turning in to continuous dizziness over night. She was continuously dizzy for a yr prior to the correct diagnosis and the drugs that controlled the condition. People with MAV also get all different kinds of dizzy symptoms - some have vertigo - true spinning - some a sensation of motion when there isn't any - also called vertigo - and some just have dysequilibrium and/or lightheadedness. Many have a combo of the above.

Obviously whether it is migraine will be for a specialist to say, I'm no doctor, although you really do need to see someone who knows about it. How knowledgeable a neurologist will be about this will depend on luck. Most of the neuros I see are aware of it, (I see different ones as the hospital trains registrars who work under the consultant, so I don't see the same doc whenever I go) although I have seen one who knew nothing about dizziness and kept asking me about my headaches, which I don't have.

Another possibility is that you have contracted VN which is stirring up the underlying migraine condition and making it harder to recover from the VN. I say this due to the light sensitivity. As I said before this is not a feature of VN. The fact that you had migraine prior to this would suggest it is probably playing a part in the mix somewhere. My hunch is that a preventative would help you whatever, whether its to calm down the migraine activity stirred up by the VN or to treat the MAV.

Again, just to reiterate, MAVers can never have experienced a migraine headache in their life. Although a lot of people do have some prior history of headache and then suddenly get hit with this. I had migraine headaches many years before, they stopped and then years later this hit.

There is a lot of information in the sticky post at the top of this board on the different conditions. One other that I forgot to mention is menieres disease which can also be one sided, but to get this diagnosis you would generally need to have hearing loss on a test. Without it, it makes migraine the more likely culprit.

best,

Many thanks for the additional info. What is so frustrating is the time it takes to get any sort of diagnosis. whilst I am very grateful to be seeing a General Med. consultant next week, I very much suspect that he will either refer me to a neurologist or tell me to go back to my GP and then I will have to ask him to refer.
Given that the condition seems to be continuous at the moment - some hours of the day are OK, some not so good - there is no clear reason why I should stay off work any longer, but I do fear going back to work and how it will affect this thing.
I did wonder about VN. Not sure if this would be seen on an MRI (nerve damage??).
I guess I could ask my GP for some specific migraine treatment tablets other than run of the mill stuff?

Hello,

Obviously ideally you would have a diagnosis before starting a drug treatment with a GP. Although the drugs used are not the type people take when they get a migraine - triptans like exedrin migraine or pain killers, they are daily preventatives - drugs such as amitriptyline, propranonol, pizotifen to name a few.

Yes, the quest for diagnosis is disheartening. The reason why I've written such long posts is I know how frustrating it is. I also know how much nonsense doctors can talk when it comes to dizziness, then you see someone, get disheartened when they diagnose you with anxiety or tell you there's nothing wrong with you etc... Bolster yourself for that but take heart from the fact that there are doctors out there who know how to treat dizziness. If you really can't get any joy where you are you can always go to the hospital I mentioned in London where they will absolutely give you a working diagnosis and try treatments. Sometimes they try and treat you for vestibular neuritis first - this is a type of physical therapy called VRT - if that doesn't work they move on to the migraine drugs. Although sometimes they treat you for MAV straight away depending on your history, symptoms etc... There is no test that can absolutely tell you you have MAV.

I think to see the the consultant at neurotology privately and to have the tests they always run with a new patient costs about £500. Although I'm not sure. Generally, if you don't have private insurance, they will transfer you to their NHS list after you've seen them in a private clinic. So you often only have to pay for the initial bit.

You are soooo helpful! I started another thread because I thought I was rambling on too much in this one....so please don't feel I am ignoring you!
I have printed out the info from web about the hospital in London and Dr Davies to take to my GP when I see him next week. I suspect that NHS waiting list is pretty hideously long, but may be worth a shot anyway. Our local hospital in Addenbrookes which is a vast teaching hospital and my mum thinks that it would be unusual if nobody there with similar experience...but not sure from what I've seen on the web.
Thanks again:)

No worries, you're not rambling. I am popping in here more than usual as I'm taking a bit of time off during this relapse, so am happy to be helpful if I can. I read your other thread. I didn't realise you have been showing a steady and slow improvement. It's entirely possible this is VN - although still thrown by the light sensitivity - it's possible you had some migrainous activity triggered by the VN when this was first going on. If it is VN, then that can absolutely resolve itself in a matter of weeks/months if you get lucky. Of course it is also possible for vestibular migraine to occur in weeks long patches and then for the migraine activity to stop. Some brilliantly helpful info is available in the video clips in Dr Rauch's otology clinic link - it's called something like that anyway - they are in the sticky post. He does an explanation for lay people about each condition, how you recover etc...

I would entirely discount the what the ENT said as the ramblings of someone unqualified to treat a dizzy disorder. All of your symptoms are consistent with some form of vestibular disorder, either VN or MAV. I am fast coming to the conclusion that a dizzy patient should never be sent to an ENT. Did she run an ENG and rotary chair test. This is when they squirt water in your ears and swing you round in a chair whilst watching lights?

I know how frustrating it is, you just need to see someone who knows what the heck they are talking about.

If this is VN it could resolve itself before you even get to see that person. Let's hope so. The people on this board are often the ones who have the most problem recovering. There are people who appear and then dissapear fairly fast having got well. I know people with lab/VN who have put the whole thing behind them in under 3 months.

best,

Hi hpep. the ENT consultant did the Hallpike test only (lie back on the couch/head turn), looked up my nose, down my throat, in my ears, made me blow my cheeks out and smile, close my eyes and march on spot...all the things my GP had done 3 weeks earlier. The only different test was that she sent me to have an audiogram which came back absolutely fine. She was very pleasant but on reflection it was a very swift resolution of my "problem". I guess that the initial attack happened around 17th August and I did not see her until mid September so any initial VN symptoms may well have disappeared by then....??? MRI scan soon although I know that this will be more to rule out the real nasties than to diagnose anything in particular. Also my GP has got me an appt. with General Med. consultant next Thursday...but poor guy is unlikely to be a specialist in these types of disorders and will probably be as confused as I am by symptoms! If no joy at all from him, I will go back to GP and ask for referral to neurology at Addenbrookes I think.
thanks for the positive messages re: recovery. It is difficult when researching all this on line to be positive because those that have recovered, as you say, tend to disappear so the overall impression is that once one has this problem it is a lifetime sentance....which of course it could be and certainly is for so many.
I'll keep reading and posting and thanks again.

i am also newhere and new also to thi earproblem been going on since june, after 2 ear infections, dizziness is tolerable but balance is so off and sometimes mind. would someone please tell me this is normal my patience are if not already have run out. did the mri , blood work spina which i get the results next week , the reason being is becausemy right arm would just shake and mylegs were so weak and shakeyi would need assistance walking of course all while spinning spinning has gotton alot better , my balnce is shot seem as though my coordination is shot also cannot concentrate as before . someone please tell me this is normal (ha,ha) normal within the terms of vestibular neuritis , or bpv. seen a ent and since i had no hearing loss he seems to think not relates to my ears, ha. pressure , ringing in left ear and alot of pressure at times. i felllike i lost my life all summer. sometimes i can laugh such as yesterday when i went to pour my glass of water dowm the sink and missed the sink poured it right on the counter. feels as though i am walkink on an uneven surfacemost of the time, am so interested if it is also normal with this to feel not todizzybut for example whrn i am talking with someone say outside standing up for 10 minutes or so start to get that dizziness have to come lay down . any comments would help . cannot wait to see a good ent ,doctor in the e.r. seems to think it is vestibular neuritis. thanks a bunch going shack wacky another thing when i TRY to go out of course not driving i feel as feel as though iiii'm getting motion sickness all the time was in the car for 20 minutes the other day had to come home, when i walk outside for 10 min i feel so disoriented,, so glad i found this board , because with every symtem i would want to freak out , and did at times , anyone been through this all . Thanks abunch for any info

sorry about all the typos

Welcome to the board meegan! So sorry you are going through all of this, but just be assured that you will get better. It may take a while, but eventually you will get your life back. We have all been down that road, and most are still on it in one way or another.

If you have Labyrinthitis or vestibular Neuronitis, your recovery SHOULD be in just a few months. If it lasts any longer than that, you should look into migraine as the possible diagnosis and treat it accordingly.

Hang in there - we're here for you! :)

Hi Meegan,

Sorry you're going through this. It's really bad at first because so many things seem to be wrong all at once, and it seems like it's impossible that they're all related. This dizziness thing can really mess up your whole body somehow. Nausea, motion sickness, problems concentrating, difficulty focusing on things... all the stuff you've mentioned, most of the people here have had, or still have, as their symptoms as well.

You're definitely not alone in this, and this board has some great people who'll support and help you as you get to the bottom of this. :)

thank you sooo much , but soglad to have peo;plewho understand my husband gets agravated it think because he thinks we should try longer walks, i try to tell him when i have had enough, sounds likeyouhave alll been there did that. i cry by myself like you all i'm sure i told everyone don't ask me one more time how am i doing today because they don't get it , sure not villantly spinning and can walk , so they think i'm fine , what a complicated thing. soglad to vent .:)

Yes Meegan, we've all done A LOT of crying - even the guys! ;) This illness is so devastating because it usually sudden and violent, and can linger and linger. Sipa is right in that it really does effect your whole body and being. When your vestibular is off, your whole WORLD is off. I really hope that someday, someone discovers some WAY to better heal those with vestibular problems, instead of just telling us to take anti-dizziness medication. They have really got to do some more research and advances on vestibular disorders, seriously!

You will find (as you probably already have), that those around you do not understand what you are going through. But please continue to be patient with them because they literally cannot comprehend the magnitude of our ill-feelings. If you have never had a vestibular problem, you cannot understand it. Especially those who have never gotten motion sickness (sailors, fishermen, etc.). The best way I can describe this illness to people is feeling constantly seasick. Those who understand motion sensitivity can KIND of understand that concept. But those like my husband, who NEVER gets seasick, carsick, motion sick, or headachy just can't understand. They aren't trying to be mean - they just don't get it.

Patience is a virtue with this thing...

I was pretty much going to post exactly what Missy posted.

It's perfectly ok to cry and feel upset and depressed and frustrated. Don't do it alone though! It's much easier if there's someone who can comfort you. Let your husband see how upset you are. It's ok!

It's really, really hard to explain. If he doesn't know what it feels like to get seasick or motion sick, well... that makes it a LOT harder. Maybe similar to having a very light stomach bug or a hangover! You feel kind of nauseous, unwell, and just "off." If he's been drunk before, he probably knows what it feels like to get dizzy when you lie down. Try explaining that to him, with the distinction that you don't only feel that dizziness when you lie down but at different times, just sitting there, or doing anything - or nothing at all!

That is another explanation that I give to people by the way. It definitely feels like you have a permanent hangover, without the fun of the previous night's actitivities! :mad:

Or like being drunk and having a hangover at the same time. And yes, without having the fun!!! grrrr :mad:

don;t getme wrong my husband has been wonderfull, thank god , and yes we should REALLY push for research , and by the way yes he has had the bed spins you know when yousay your never drinking again haha, actually the last time i had a drink was at a Kieth Urban concert , but i will never ever ever again, on a lighter note talk about a concert, anyone (ladies ever see him) whew

Me again , thanks a bunch telling me pointers how to explain it to people really helps my friend comes over the other night and is cryingcause as she said she wantsme back. hard real hard, try to explain why you cannot go shoppingor beach with her right now is very difficult to explain. its hard for people to understand.

Meegan...let them know that head injury and vestibular N/labs have the same therapy for vor/vestibular problems. That should help them understand.