Hello everyone!

I just got off the phone from the ENT doctor (she was kind enough to give me a phone appointment as I felt too rotten to travel over there).

Since I last went I have learned a lot more about inner-ear/balance problems and I questioned her as to why I had never been told about VRT or CBT.
She told me that as far as VRT is concerned the leaflet handed out with a few exercises on were VRT and the physio department is so packed they just give ENT department leaflets to hand out and the only other thing that they would offer in the physio department on top of those basic exercises is a bit of encouragement.
But I know that this isn’t strictly true – I’ve read that VRT is much more effective when tailored to a specific patient’s needs/capabilities etc. Plus these are just a few little exercises that aren’t really ‘proper’ VRT as far as I am aware. Also with your recovery and development surely you need to alter the exercises to match your changing state.

She said that in my notes the doctor I last saw (I usually see a different one every time even though she is the main one) suggested that I seek counselling (he thought the “feeling weird/disorientated and brain fog – resulting in my anxiety were psychological and just anxiety PAH!). Anyway I HAVE got a counsellor now (for the anxiety and to discuss other things in my past). We agreed that this was good as I can also do some CBT with the counselor.

I also asked her why if they think I have BPPV (their latest guess lol) I hadn’t been told about the Modified Epley Maneuver which could well be helpful for me to do at home. She said “Oh you saw Mr Blah Blah on so and so date and he did the Epley Manuever on you then.” I said, I know and I did feel a bit better afterwards but soon felt rotten again.” She said that you normally only have to do it once for it to be effective – well obviously NOT! Grr! And also - I read yesterday the results of a study where people did the MEM 3 times a day for a while and felt a lot better after a week.
She told me (probably rightly so for legal reasons) that she cannot advise me on whether to do this or not. I’m sure they could have informed me of it (if they knew about it humpf!)


Ok now then this is the MAIN POINT and the most ANNOYING bit:

I also asked her why she thought my condition was changing (from very unstable balance and not being able to tip my head and waking up around every 2 weeks with the room spinning) to not so severe dizziness and usually less frequent but with worse brainfog, disorientation and anxiety.
I asked whether she thought it was compensation – she didn’t even answer this. She said that an inner ear problem SHOULDN’T CAUSE BRAINFOG AND DISORIENTATION!!!!
I was literally begging her to believe me that I know a lot of other people now with the same/similar condition and a lot of them all feel very similar.
She didn’t seem to BELIEVE me or KNOW that a lot of us have brain fog and feel disorientated!!! The brainfog and disorientation is the worst part for me and it’s a scary thought that a DOCTOR was telling me it’s not anything to do with my inner-ear problems. THANK GOD for the lovely people on this message board which basically prove to me that it IS or I would probably be out of my mind with worry now.

And I said “if you see all these people with a similar condition to mine as the other doctors have told me – why don’t you know that it can cause this?” She said “I don’t know.”


I mentioned maybe I should see a Neuro-otologist and she told me that anywhere else I went would just do the same tests as they have carried out there. But I’m sure that they might at least KNOW that this can cause cognative problems, brainfog and disorientation.
WHY doesn’t she know this?!

What with this lack of knowledge and the handing out of leaflets instead of proper VRT, it really seems that corners are being cut with people’s health and LIVES. Very horrible and scary thought!

It is annoying that she obviously doesn’t completely know this subject as she claims to (and she is a specialist whom you can – and I have - also pay to see privately). She told me that she can only tell me what she has learned from her text books etc. Well maybe they SHOULD check out more modern studies. I wish I’d been in front of my PC with all the facts and names to prove to her that what I was saying is true! I told her that I wished so much that I could show this site and the other information I have learned from it to her and her colleagues!! Bah!
Yes she is an ENT, not a Neuro-otologist but if she, herself tells me that she doesn’t think I need to go elsewhere then she should do her job properly as a doctor and KNOW what she’s talking about!


She said I can seek out information where I like if I feel that’s the path I want to take and to maybe ask my GP to be referred elsewhere for a 2nd opinion.
She seemed really annoyed that I was questioning their treatment of me and that I seemed to know more about it than her.

As she was about to go (kind of huffily) I said can I tell her one more thing – that nearly ever person I know that has this or similar condition also has anxiety because of it and she said “I know” so then WHY do they go “ooh it sounds psychological”, make you feel like you’re making it up and why don’t they do more to help us, and know more about it?? It’s their job!! I had also said to her several times that the only reason I am anxious is because this thing makes me feel so awful!

She left me with little useful information to be honest and she seemed more concerned with (and stressy about) the fact that I had done my own research and didn’t seem to trust her and her colleagues’ word, than actually trying to help me. There was also no encouragement or recognition for the huge struggle I am having with this thing. Infact when I mentioned to her that when they had signed me off a few months ago ‘cos I seemed to be getting better on the one hand it had felt good because it was like they were saying I was getting better but on the other hand it was scary because I had lost that support if I needed it. She said “I don’t know why you DO need our help so much!” HUH!!!


My Mum suggested that I have a phone appointment with my GP.
I called and got an appointment – she called me back within an hour or so! She was REALLY understanding and told me that this region is seriously underfunded and sometimes the medical staff don’t even get to hear of facilities etc that are out there.
She also told me that consultants often also only ask questions that they want to hear the answers to and often don’t ask enough or the right questions to truly find out how a patient is feeling. (So that might be why they didn’t know about the brain-fog etc).

She told me that the physios at her surgery do a bit of VRT and give you more time than the physios at the hospital so she has put me down to see them. And she checked that I was seeing a counsellor who was doing a bit of CBT with me. (She basically listened to what I was saying should have been done/felt were important and tried to make it happen for me). I thanked her for being so nice and helpful and told her she’d made me feel a bit better. I got off the phone and called my Mum to tell her how it had gone and I just cried because the ENT Dr was so horrible/unhelpful to me and also the relief that someone (my GP) was FINALLY actually LISTENING to what I was saying, BELIEVING me and trying to HELP ME!!!

Sorry I just needed to vent and let you know some stuff!!!

Hope you’re all good and *huge healing hugs*!!

Katkin xxxx

Aw poor thing. ENT's in general aren't very good with inner ear matters. Don't listen to anyone who tells you brain fog is not an inner ear problem. You gotta find a very knowledgeable specialist, preferably an otoneurologist.

oh Katkin,
That sounds very frustrating. I'm sorry that you had to go through that. Luckily you eventually got some answers, even if they weren't from the ENT. I've run into a lot of similar problems, I actually had to file a grievance about my primary care pysician when this whole thing started because he refused to give me a referral to an ENT. Then after I saw the ENT my PCP asked me to come in. When I got there he told me I had Meniere's disease (which is not what the ENT said) and instructed me to take Antivert until the problem went away. Needless to say, I've switched doctors since then.
My visits to the ENT were miserable at first, but somehow he got wind of the the fact that I had filed a grievance against another doctor and he's been quite attentive ever since. I can't say that he's my favorite person, because he can be quite abrasive and is a little too eager to solve everything by cutting it out or drugging it up. But I've found it very helpful to go to his office armed with my notebook and my husband (or a friend) to sit in the room and ask questions with me. My actual time with the ENT has gone from 10 mins. to 30 mins.
I would def. get a second opinion if I were you... hopefully from a neurotologist. If nothing else at least you get to see a different doctor, maybe one who is more understanding.
You must be glad that you finally get to go to VRT... I just got my referral to go today!
hope you're feeling better,
Cori

HUGE HUG Katkin.

The fact is - as you rightly know - that in the UK there is a serious lack of VRT centres and funding. It is not right to simply give someone a booklet - tailored VRT is needed.

SHOCKING that she said people with inner ear disorders dont have disorientation and brainfog. I do katkin.

SHOCKING also that she did nt know what an MEP was.

You prob know my advice - you have had this long enough - try to get that referral to london - they would not simply "do the same tests" they have more testing than anywhere in the country - and the professionals to offer decent VRT and CBT.

I can guarantee THEY would not mutter blankly when you say you experience brain fog.

Hugs xxx

Hello,

Just to say when I was seen in London, one doc told me that a lot of their patients are so foggy and disorientated they have a problems getting a proper symptom history out of them. ENT's are not specialists in the inner ear, they are specialists in the middle, out ear, nose and throat.

I saw 2 ENT's - one of them told me outright that inner ear disorders don't cause brainfog. They often don't know what they're talking about.

best,

hbep

Hi katkin,

So sorry to hear about this disappointing ENT. DON'T be discouraged by this less than average doctor. Your symptoms are REAL and not just psychological. Anxiety is one of the major conditions driven by an inner ear disorder. If you need some literature to back this up (ie. from Neurology), I'll let you know. Maybe you should mail a few to the so-called doctor and educate her. And brain fog? I had enough brain fog to spread around Sydney's entire population. I still get slightly fogged occasionally. It's just common sense that an inner ear disorder would cause disorientation. I know enough pros in my department at the university to realise your ENT doesn't understand and needs to read her textbooks again...or better, throw in the towel.

Take care....Scott

Hey Katkin---

Im so sorry you had to go through all of that with your ENT. I went to 3 different ENT's and told them I feel "spacey, disoriented, etc., etc...."--all 3 of them looked at me like I was a weirdo or something. But when I went to the neurotologist he knew exactly what I was talking about--especially the disorientation--he even said something like--"Im sure you dont like big department stores, and stores like walmart right?" He hit it right there!--I cant stand to go shopping at all I get so confused! So dont worry---everything you are feeling is normal.

Lots of Hugs!
Sherrie

She hasn't got a clue, Katkin. As a long-term member of the spacey brainfog brigade, I know exactly how frsutrating it is, and I got absolutely nowhere with the three ENTs I saw. The difference when I went to London to see the neurootologist and the vestibular physio was unbelievable. If you're in the UK, that's where you need to go if there's any way possible to get referred there - you'll be listened to and believed there.

(((( hugs ))))

I could put my fist through a wall when I think of what people with inner ear disorders have to go through with these idiots, I really could. Hang in there, chicken - you're not alone.

Ann xx

For Schao, maybe you can clear this up, I have never been to see a neurotologist before, (maybe I should!)

My understanding of brainfog and disorientation is when there is damage to the vestibular system the brain has to take on the extra function of the inner ear and balance. When stressed out or tired or in the compensation phase the brain can only handle so much and can't manage all of the extra load from the lack of vestibular function. Is this right? What does the Neurontologist say about the fog? I get it on and off in waves, am just beginning to come out of a bad patch after a stressful time with my kids being injured in a tobogganning accident. I thought it was because of that, brain too busy with dealing with stress and can't handle the function left from a defficient vestibular system...would love to know for sure. Knowing is half the battle I think.
Thanks for all the info, this board should be required reading for doctors!

my ent never heard of brainfog either, but when i went to see my otologist and told him i felt like i was stoned he said, " oh, you mean brainfog". goes to show you what some ENT's know!

you guys are lucky... i told my otologist all that crap like i feel stoned or and drunk but he doesnt know what im talking about

i told one of the doctors i had who was clueless to to go smoke about 5 joints then spin around really fast and try to function. he laughed at me and said people would pay to feel how we do :). if i could bottle it and sell it i would!

i told one of the doctors i had who was clueless to to go smoke about 5 joints then spin around really fast and try to function. he laughed at me and said people would pay to feel how we do :). if i could bottle it and sell it i would!If only the feeling created by this monster was a "high"...unfortunately it's anything but....:eek:

Scott :cool:

i agree! at my worst my head feels like it weighs about 20 pounds and like some one poured battery acid in my head. not a high at all! gives me major tensoin headaches too!

Hi guys I have read and really appreciated your posts! I just haven't had the chance to answer yet. I'm really sorry!
Thank you so much - I shall answer properly soon!
Scott that literature sounds mighty handy!!

:)

Katkin,

I just had to reply to say I completely understand how you are feeling. Or at least I did in the beginning of this crap just over 2 years ago. I'm basically fine now, but I did have BPPV, and it's completely normal for you to have an episode of it and then seem okay and then for it to return. Matter of fact my ENT (I seem somehow to have been blessed with the only one on the planet who knew something about this disorder) told me in between episodes (and before I'd had the Epley) that there was a good chance it would come back. It did, though it waited 6 months. I then had the Epley, which cured me of the violent spinning when turning my head back and to the right. HOWEVER, just because that worked on me doesn't mean that there aren't many people out there who need to have the Epley performed more than once, contrary to the ill-advised thinking of your ENT. Many on this board have talked about having it done more than once.

I think you should check out the video and directions for the MEP in the information archive here (the first post), if you haven't already. Then, next time you have some spinning, do them yourself 3 times a day until you can't trigger the spins any more. It's perfectly fine to do them yourself. My ENT had also told me that if it returned again (knock wood, thank god it hasn't) that I didn't really need to have him do the Epley (unless I felt more comfortable that way) because I could do it myself at home. Your ENT is just a plain jerk who doesn't know enough and so is covering by being an insensitive idiot.

And as for the brain fog, well, you already have it straight there sister. Inner ear problems without brain fog are few and far between. My BPPV episodes were only two, but the crawling out of the hell of the brain fog and cognitive problems took me almost 2 years. I still have tiny blips, but I've learned to deal with them, even though they do cause a bit of anxiety when they start. They ALWAYS pass, and I have to remind myself of that. Time matters most with this stuff. Even though you think you're going to go nuts and never be normal again, you will, it just takes time. Chuck that ENT in the trash bin and move on. Sounds like your GP is a good start. You know in your heart what's right, and you are your best advocate, which unfortunately has to happen with this stuff because docs know so little. If it hadn't been for the people here, partic Ilia, CL, Kathy, Subs, Scott, I would have jumped off the cliff long ago. Well, not really, but you get my drift.

Good luck and keep pressing on in your own best interest. We're here for ya!
T

Hi Katkin,

Haven't post in a while, but your post caught my attention.

Yeah, ENTs don't have the experience or knowledge to deal with complex vestibular problems, the majority of people are straightforward cases and respond to the standard treatment, hence the ENTs are thoroughly bemused when someone doesn't fit the mold...

A doc once said to me, after I asked him about the brain fog and visual disturbances, "do you regularly use drugs?", which made me flip out a bit.

I can't say I'm suprised with your ENTs responses.

The MEPs are a new technique, and will have to go through years of studies and evaluations before it is deemed effective and comes into regular use in the states, and it will be a few years after that before anyone in the UK starts to use it.

VRT is widely available in the states, but there are only a handfull of herdman qualified (the standard for PTs) PTs in the uk. Most physios and ENTs will not of heard of it, sure there will be plenty of PTs who will take you through the cawthorne cooksey exercises, or through a crib sheet (or even "balance therapy" - designed to help balance problems in the elderly), but these aren't VRT, and have been shown to be only marginally more effective than a walking regime. Some studies have shown that while generic exercises increase the speed of recovery they do not increase the frequency (ie, CC exercises speed up recovery of those who would recover anyway) - a custom VRT program is effective most the time, which is why it is so important. In the US, because of the way medical care is funded, PTs in general are much more common place, and VRT specialists are widely excepted.

As for the brainfog, this just displays the ENTs lack of understanding and knowledge.

Hang in there...

BG - wondering how u r - any success with LL?

xxx

Cheers for asking CL...

I've been tied up these past few weeks trying to get my back sorted (more injections) - helped a bit, but still hurts.

Not sure what had happend when I last posted, but LLs sec said I need new referal from my GP, he won't refer me because as far as he's concerned nothings changed. So I'm contemplating trying medications (possibly MAV) as if it doesn't cost anything then my gps up for it.

I was wondering if anyone knew exactly what caused the dreaded brain fog? I have talked to people who have had sinus problems and they had described many of the same symptoms (things too specific to just be coincidence like bright overhead lights in shopping malls making it worse) and was wondering if there is some connection between the cranial nerves and ateries around the sinuses, the vestibular system, and optic nerve system. I wonder about the optic nerve system because so much of the brain fog is brought on or made worse by visual triggers like lights and patterns etc. Also, does anyone find that eating causes a mild jump in the fogginess, especially in the mornings?

Brain fog is basically mental processing overload.

Our bodies are trying to work overtime to compensate for a dodgy balance and are overwhelmed with all the info.

BG - shame about the whole LL thing - kp me updated about the drugs.

xxx