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hbep 02-21-2004 12:49 AM

Symptoms other than dizziness
 
Hello,

I just wanted to throw this out there, see if anyone experiences anything similiar.

What other symptoms did or do you get along with the dizziness. Do you get a feeling of headache, or pressure, in your forehead, face, back of your neck, especially where your neck meets your head, into your ears, over your eyes, either as the dizziness gets worse, or sometimes without the dizziness? Mine feels like there is a tight band going through my head from ear to ear. Does your hearing ever feel muffled (not deafness) and do you ever, often for me simultaneously, get sound sensitive? Do you ever feel like you're getting a wind tunnel effect in your ears? Sort of like when you put your ear to a seashell? Does your tinnitus randomly get louder for short periods? Do you ever get pain in your ears?

Also, for the women on the board, I know many people experience a worsening of symptoms around your period. Does this always happen - can you almost time it by the clock? I get worse every period, generally starting 3 days before it starts and getting better 2 days in to starting. The above symptoms I've described get worse, as does the dizziness.

I am basically double checking my diagnosis - I am curious as to what role these 'headaches' play in my condition. Whether they are simply making my VN worse, or if I could have migraine associated vertigo. I know the text book medical description of MAV is attacks interspered with symptom free periods, but like all these things, this doesn't seem to be true, there are atypical examples of people with 24/7 symptoms, who simply experience periods where their dizziness is worse. I know of a number of people with MAV of whom this is true. Also, although worsening of symptoms is common for people with VN around shops and busy envirnoments, this can also be true of people with MAV - light, sound and noise can provoke migraine. The thing making me really curious is that MAV is often much worse around a period, and also, although I am worse with visual stimulus, I am actually often 100% or at my very best when in a dark environment, this doesn't fit a VN diagnosis. If anyone has any answers to the above questions it would be really helpful, I'm arming myself with info for my next neuro oto visit. It's also entirely possible I have 2 things going on as migraine can actually cause vestibular damage, which means you can have some VN symptoms and some MAV symptoms, which would explain why VRT has helped, but I still, for example, get much worse around my period or when experiencing headaches.

Basically it would be particularly helpful to know if other people with lab/VN or BPPV do experience these other symptoms, so any thoughts would be much appreciated.

I thought I'd write out my notions on this as it might be helpful to others still looking for a diagnosis.

best,

hbep

lizzy33 02-21-2004 01:51 AM

Re: Symptoms other than dizziness
 
hbep,

I am getting over Lab and I too experienced some of the symptoms you described. Mostly the headache, even now the dizziness is subsiding, the headache still comes and goes. My doctor seemed to think this is normal and just part of the whole horrible package of symptoms we seem to get. With me, he also put the headaches down to stress. I was constantly worried about my condition and not sleeping well which would probably give anyone a headache - he recommended Kalms for me (a herbal, non-addictive relaxant) which do seem to have helped. He felt that anti-depressants and the like would not help and would probably add to my symptoms as most of them produce some sort of side effects (even dizziness!!!).

I seem to have gone off on a bit of a tangent but hope this helps.

Lizzy x

willsmommy 02-21-2004 03:36 AM

Re: Symptoms other than dizziness
 
[QUOTE=hbep]Hello,

I just wanted to throw this out there, see if anyone experiences anything similiar.

Hi hbep,

Thanks for your reply on the other thread!

Yeh I had a good number of other symptoms OTHER than dizzyness when i was bad.

Here is a list -
1. the feeling of a buzzy/fuzzy feeling in the forehead area and behind my eyes.
2. feeling in my head when i closed my eyes of a ping pong ball bouncing all around.
3.sudden feelings of a lack of spactial awareness, although visually the room looked still i felt like was it.
4. Dropping sensation.
5. A weird feeling in the head a bit like snow, like one of those toy globes that have snow and you shake it, like that.
6. Chronic head aches and much tension and sore muscles in my neck and shoulders.
7. Fatigue - knackered all the time and complete lack of stamina, my sleeping pattern was all over the place.
8. Occasionally a feeling like a tunnel as you describe between the ears like air is rushing through them, physically impossibel so have no idea why i get that.
9. Tinnitus - oh yeh - lol - worse in the beginning and I notice it all the time when its quite and I am lying in bed or when I am straining to hear something very quiet. My hearing loss is not bad but affects the low range frequency so I find the phone and listening to quieter sounds harder.
10. Muffling of hearing - yep - again - on and off.

I have been thinking about the MAV conserns you have and to be honest i am not sure about that. Its something that I long pondered but I really dont think its that at all, well not in my own case. Didn't you haev an ENG done and didnt it show VN? and in my case damage from Labs. Proff reckoned that the assessment done in aberdeen was wrong!! and that my problem was not bppv.......lol. She reckoned that the recurrance of symptoms was brought on by preg and de-comp and fluid level changes bla de bla de bla. She attributes my recovery to errrrr getting my butt out of bed again and moving around alot.....rofl.

I had migraines before this dizzy labs stuff, and it never ever made me dizzy. But since I have had labs I get occasional migraines and it makes me horrible, super dizzy, verging on vertigo - room shifting and very off balance, in fact during the aura I cannot walk or the intense head and nausea bit. Then it tends to take a few days to get over tha :wave: t and for my symptoms to calm down again.

I hope that you are doing well.

Thinking of you, Ilia

hbep 02-21-2004 07:14 AM

Re: Symptoms other than dizziness
 
Hi Lizzie and Ilia,

Thanks so much for your replies.

Ilia, my test results were borderline, which is what makes it tricky. My peripheral vestibular disorder diagnosis is only 'probable' not definite. To add complications to that, I know of someone who has just had a MAV diagnosis who also has vestibular damage, apparently migraine can damage the vestibular nerve, BUT her symptoms are different - she gets a lot of persistent migraine type visual symptoms which I don't have. To be honest I am, as I said, double checking. I definitely don't want to cast doubt on other people's diagnosis - it sounds to me like Linda Luxon is probably spot on where you're concerned. And obviously if you have lab, then you're going to feel worse during a migraine, which definitely doesn't mean to say you have MAV. Unfortunately I have never got to see one of the big consultants in the deparment, just a registrar, who, although nice, clearly lacks the wealth of knowledge the big cheeses in the department have. My feeling at this stage is that I have been ill for so flipping long, I am totally fed up, and although I have improved a lot with 6 months VRT, it hasn't cured me. I have kept moving around but certain things are still such a blooming struggle. The fact that I do have some other symptoms, and also that I am so much worse around my period, makes me determined to pursue every avenue. If there's a chance that a migraine preventative drug might help, then I might as well try it. I'm not expecting miracles, but also don't want to leave any stone unturned.

In short, I am sick and tired of being sick and tired. I'm sure you know that feeling :)

Anyway, thank you again for your replies, It's really helpful to collect as much info as possible,

best,

hbep.

lib 02-21-2004 07:45 AM

Re: Symptoms other than dizziness
 
[QUOTE=hbep]Hello,

I just wanted to throw this out there, see if anyone experiences anything similiar.

What other symptoms did or do you get along with the dizziness. Do you get a feeling of headache, or pressure, in your forehead, face, back of your neck, especially where your neck meets your head, into your ears, over your eyes, either as the dizziness gets worse, or sometimes without the dizziness? Mine feels like there is a tight band going through my head from ear to ear. Does your hearing ever feel muffled (not deafness) and do you ever, often for me simultaneously, get sound sensitive? Do you ever feel like you're getting a wind tunnel effect in your ears? Sort of like when you put your ear to a seashell? Does your tinnitus randomly get louder for short periods? Do you ever get pain in your ears?

Also, for the women on the board, I know many people experience a worsening of symptoms around your period. Does this always happen - can you almost time it by the clock? I get worse every period, generally starting 3 days before it starts and getting better 2 days in to starting. The above symptoms I've described get worse, as does the dizziness.

I am basically double checking my diagnosis - I am curious as to what role these 'headaches' play in my condition. Whether they are simply making my VN worse, or if I could have migraine associated vertigo. I know the text book medical description of MAV is attacks interspered with symptom free periods, but like all these things, this doesn't seem to be true, there are atypical examples of people with 24/7 symptoms, who simply experience periods where their dizziness is worse. I know of a number of people with MAV of whom this is true. Also, although worsening of symptoms is common for people with VN around shops and busy envirnoments, this can also be true of people with MAV - light, sound and noise can provoke migraine. The thing making me really curious is that MAV is often much worse around a period, and also, although I am worse with visual stimulus, I am actually often 100% or at my very best when in a dark environment, this doesn't fit a VN diagnosis. If anyone has any answers to the above questions it would be really helpful, I'm arming myself with info for my next neuro oto visit. It's also entirely possible I have 2 things going on as migraine can actually cause vestibular damage, which means you can have some VN symptoms and some MAV symptoms, which would explain why VRT has helped, but I still, for example, get much worse around my period or when experiencing headaches.

Basically it would be particularly helpful to know if other people with lab/VN or BPPV do experience these other symptoms, so any thoughts would be much appreciated.

I thought I'd write out my notions on this as it might be helpful to others still looking for a diagnosis.

best,

hbep[/QUOTE]
hbep,
get the book heal your headache, it will explain so much you will be in shock, it is by david buchholz. i think alot of your symptoms if not all are in this book, even the tmj. it is all connected. get it and read it and let me know what you think! i am still trying to figure out what is wrong with my ears, i am going to yet another dr. next monday and in the meantime might try to get checked for tmj. hope this book helps, i think it just might! libby

realbelle 02-21-2004 08:07 AM

Re: Symptoms other than dizziness
 
Hi Hbep, just wanted to let you know I was dx with BPPV and can answer YES to your symptoms. Blurry vision,headaches, heavy head, pressure in head, eyes, forehead, ears.Sometimes a burning in the forehead and top of my head. Neck gets very sore. I also have the 24/7 feelings of being on a boat--rocking,swaying,jerking,bouncing--my body doesn't actually move it just feels like it.Which just drives me crazy.Feels like marshmellows on my feet and my legs are made of jello. Tylenol does help my hedaches. Hope this helps. Good Luck on your next doc visit. Prayers, Belle

hbep 02-21-2004 01:37 PM

Re: Symptoms other than dizziness
 
Hi lib and Belle,

Thanks for your replies also - really helpful. Lib, I read 'Heal Your Headache' a while back and yes it's a great book. It's also one of the things that really got me wondering, along with some other things including that you got a MAV diagnosis and we share some symptoms in common - I think I wrote to your before about also experiencing myoclonus and weird vibrating sensations in my ears etc... I do have a tmj diagnosis, along with a lab diagnosis, one of the things making me wonder is that tmj can often be confused with migraine. I'm not at all certain about any of this, as I said I'm just considering it as a possibility. I guess one of the criticisms I had of the Bucholzz book is that he attributed a lot to migraine - you could end up thinking no one ever had lab, bppv, or tmj, it was all migraine, which clearly isn't true.

Anyway, hope your next doc appointment goes well, lib, and belle, hope you are feeling a bit better,

best,

hbep.

Emsybobs 02-22-2004 04:23 AM

Re: Symptoms other than dizziness
 
Ok, Hbep, I can totally see where you're coming from with looking at other things. It complicates things I think that you did not see Linda herself. What I would say is this: worsening of dizziness around period is TYPICAL of inner ear stuff, my ENt has given my water tablets because of this. It DOES NOT mean you have MAV; Yes I have many of the symptoms you describe, loud tinnitus in bursts, senstive to noises etc; Thirdly, ok I have ordered this heal your headache bk and Im pretty sure you told me about it so you mustve read it but...many things can cause eustacian tube problems etc not just MAV. Our symptoms overlap into many things, yes they could fit into MAV but they could also fit into Lab or VN. And the latter are far more common.

Finally I know just what you mean about being sick of being sick and tired. Ditto. Hang in there and trust your diagnosis. You are getting there. xxx

Emsybobs 02-22-2004 11:32 AM

Re: Symptoms other than dizziness
 
Have just come on here again and realised I missed your post above Hbep hence why my post above may not have made much sense! You hit the nail on the head about the headache book - exactly what I was trying to say. Lib - yes E Tube probs COULD be caused by migraine, but more frequently, they can be caused by a host of ear problems.MAV dizziness is not typically constant, you would have more episodes.I do not have. And the period thing is misleading as as I have said before, any inner ear problem can cause increased dizziness around this time - due to fluid retention xxx

brina 02-23-2004 02:09 AM

Re: Symptoms other than dizziness
 
hi hbep,

my computer is acting up big time, i posted and lost it all, anyhow yes add me to your list of having similar symptoms, the only diff is a lot of them ive had before and during what i have now, maybe this is because my inner ear problems started when i was about 12?
feeling of pressure in head ,forehead and neck? yes, i had headache and neckache 2 weeks non stop before this so called labs which started end april last year, my neck was very sore at the base of the scull, off centre left and right, that felt like bruises.
The pressure, no pain, started with the rocking bouncing dizzy that followed the headaches, this was behind my eyes and nose and felt as if it could push my upper teeth out, this would come in waves.
when i started with tinnitus i felt the muffled cotton wool like sensastion in my ears, i could hear ok, i became very sensitive to sounds , normal sounds became very loud, the bta said this is hyperacusis. the wind tunnel effect for me seems to come just before a loud attack of tinnitus i also my hearing quietens down temporarily, it does get randomly louder, it can even happen when i sleep and wake me.
I rarely get pain in my ears if i do its because of flu or colds, strangely i get a terrible itch that follows a cold or flu , very deep in my ear and its unbearable cos u cant scrach it i had this recently, i even tried scratching the back of my throat with a toothbrush not i good idea.....lol.
Time of month.....yes i have noticed mid cycle i am slightly less slip slidey in my head,
and it increases days before the start.
as for migraines i have had the flashing spot in vision that grows until its out of vision,
i can have daily for weeks at a time , a blob or spot of light, almost centre of my vision edges in black . not always a headache but when i do its over my left eye and i feel nauseous and my eyes water a lot.........as far as the dizziness i have had bpv since 12 which i recoverd from pretty well after each attack, though not very well during them....... have had the fluttery eardrum feeling for years, u told me the name of that previously, and a rummbling that feels like in the back of my head rather than my ears ? also the feeling that i suddenly feel like im falling or tipping forwards .....

lorr

dizzyblonde1 02-23-2004 04:36 AM

Re: Symptoms other than dizziness
 
Hi Hbep, Just wanted to add my own experiences to the above. Like everyone else on here I seem to suffer a whole range of weird and wonderful symptoms, however I was fortunate enough to get seen by the so called "big wigs" at queen square very early in my illness, and consequently got VRT underway comparatively quickly. At this time I was given a definite VN diagnosis, nothing else would be considered or discussed at that time - or in fact until I had done six months of the nodding, spinning, bending and rolling which constitutes VRT. Only at this point were alternatives taken seriously and I have since been given a MAV diagnosis by the same team of Dr's which once looked me straight in the eye and told me "you definitely have vestibular disease!".

How this fit's in with my ENG test results I am not entirely sure, though like you, my ENG results did'nt show much of a deficit, and that was shown only in one plane, though at the time that was considered to be sufficient to give me a solid diagnosis. Research I have done on MAV since my diagnosis has also highlighted that up to 25% of migraine sufferers may exibit ENG test results which are consistent with peripheral vestibular damage.

What I'm trying to say I suppose is not by any means that you have MAV, but that also you should not entirely discount it. From my own experience of consultations with the UK's top neuro-oto's, diagnoses given are to some extent diagnoses of exclusion and probability which are then confirmed by a positive response to treatment. From my test results and symptoms they could possibly have said that i was 98% likely to have VN, therfore that is the diagnosis I was given. If VRT had cured me then noone would have looked any further. This is not a criticism of the Consultants seen, there is probably no other way of going about dealing with illnesses of this type due to the similarity in presentation and the overlap in underlying pathology. I also do not want to undermine people's confidence in their own diagnoses, the vast majority will be absolutely spot on and it is vital to follow the prescribed treatment regimes. However, I do also think that keeping yourself well informed about possible alternatives is a healthy approach, I think it is important to feel that you are dong as much as you can physically do to aid your recovery.

As for the exact nature of MAV, let's face it, MAV itself is an atypical migraine therefore is a typical presentation of this really feasable?. People talk of typical discrete episodes of MAV in the same way they talk about typical 2 month run's of Lab - this may be the most common form but is by no means the only form. I do experience virtually 24/7 symptoms, I certainly could'nt identify prodrome or aura phases for example yet my Neuro-otologist seems pretty convinced of my diagnosis.

Hopefully next time you go to the hospital you will have been doing the VRT long enough to have a clearer idea as to whether it really is helping or not, and hopefully if not, this is the time they will take other possibilities a little more seriously with you. If not (and It pains me to say it as an NHS employee because I think it is thoroughly wrong that you should get better treatment this way) maybe getting a private consultation would be beneficial, even if it just convinces you that you are in fact getting the best appropriate treatment.

Keep your chin up hon (unless that makes you dizzy of course!), it's a ridiculous test of patience (I'm still mortified about wasting six months of my life on the wrong treatment so I know where you're coming from to some extent), but I really do think that ultimately you will get well, xx

hbep 02-24-2004 06:20 AM

Re: Symptoms other than dizziness
 
Hi there Dizzyblonde, Brina, Emsybobs,

Thank you for your replies.

Dizzyblonde,

Thanks for the really informative info, what you say does seem to concur with what I've heard about some MAV diagnosies - if people don't show enough improvement with VRT over a period of time, they often try migraine dugs. A doc told me that often neurotological diagnosies are done retrospectively - namely, if the treatment doesn't work for one thing, they try another thing, and when a treatment works, they know the diagnosis was correct. I know of a couple of other people who presented atypically with MAV, 24/7 symptoms interspersed with worse patches, as you say migraine is in and of itself an atypical diagnosis, so a typical presentation seems unlikely. The good news is they both got better with migraine preventatives, I'm sure you will too - these things can take time, and you sometimes need to try different drugs and dosages but you can be helped. The one thing I've realised over all these months is, as someone else on the board says, docs can be great with the more obvious conditions, but are much more flummoxed by the likes of us, we often don't present typically, there are no definite answers, or those answers only become clear when the solution presents itself.

Emsybobs, I think we're all at different stages with our various conditions. The idea of an alternative diagnosis after six months of VRT doesn't panic me, I'm just keeping an open mind, chewing alternatives over in case it's helpful. I trust my diagnosis enough to follow what I've been told to do, namely VRT, keeping active etc... I probably do have VN and tmj, but I'm just making sure I've left no stone unturned. I do believe that 'the squeaky wheel gets the grease' so will keep asking questions, knocking on doors, double checking in case anything more can be done. It's that approach that got me this far, if I hadn't kept asking questions I'd still be under the care of the first idiot ENT I saw. I'm afraid I no longer have any reason to take a doctor's word for something.

Brina,

I'm feel so bad for you when I hear how long you've been dealing with dizzy issues on and off. Although it was really interesting to read your post, it did make me really wonder, due to the ongoing nature of your symptoms over the years, whether MAV might be something you could consider. Particularly as you mention visual blind spots - very common with migraine. Did you think any further about going to Queen's Square? Sometimes it's useful to be under the care of a neurotology department because they are more confident about trying different treatments. I know you've probably seen a lot of docs, but it could help.

Anyway, hope you're all doing ok,

best,

hbep.

Anastasia 02-24-2004 09:27 PM

Re: Symptoms other than dizziness
 
hi guys

it's been a while since i've had time to post but i had to reply to this one. i also have many of those symptoms. i have headaches daily above and behind my eyes, almost feels like the muscles behind them have swollen up. the neck pain has been pretty constant too lately (i was just compaining about it to my boyfriend). i think it's where the anterior mastoids attach to the skull...? i've been getting my neck adjusted for that and it works right away for a good coulpe of hours. also point massage therapy. i think missing a couple appointment has tightened them up again.

i find the headaches (eye and otherwise) are the worst under bad lighting. at school i'm constantly pushing on my temples and neck trying to ease some of the ache. but under my UVB lights (for SAD) i can actually get rid of the eyeball aches and sometimes the temple pain. anyone else?

i just had my chloric test on the tenth so hopefully i will have some sort of diognosis by them. i would be nice to know if there is a connection between my achey head and an inner ear problem. by the way, thanx to everyone for the info of this thred. it was very interesting:).

Ninamarie 02-26-2004 09:32 PM

Re: Symptoms other than dizziness
 
Oh must chip in with my two cents worth because as many of you know by this time I am the number one 'other symptoms person' dizzyness not even being among my symptoms. Oddly enough despite all my head pressure, muscular movement and neck pain I don't actually get headaches, certainly not migraine or anything even vaguely resembling it. But what I do get isenough to drive anyone stark, staring mad believe me.


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