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Old 07-18-2007, 04:04 AM   #1
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Lightbulb Can anybody relate to? Advise? Explain my symptoms?

Hi everyone,

I have only recently discovered this forum when googling some symptoms that have been plaguing me for years, but I could not explain/describe at all. I was astounded to see so many people with the same symptoms as me. I had thought I was just getting older (I am 26!). I am having ZERO luck in finding a diagnosis of any kind and hope someone can maybe suggest something I haven't tried.

Firstly, these are my symptoms, as best as I can remember them:
  • The usual foggy, detached, spaced out feelings. I feel like I'm dreaming or something, very difficult to explain.
  • Lack of mental sharpness
  • Loss of concentration
  • Blurring vision
  • Lots of "floaters" on my eyesight when I look at a white wall or clear sky.
  • Really bad fatigue during the day (Although this is less at weekends)
  • excessive Mucus
  • And strangely a weird crackling noise from my ears when I equalise.
  • Only one nostril works at any one time (they both work, but not simultaneously)
I had never thought that the sympoms were an actual medical problem, dont ask me why! So having read all of the great descriptions of people similarly concerned as me, off I went to the GP, now better able to explain and describe how I felt (Foggy, detached, not sharp etc) and fully anticipating there to be an inner ear explaination.

The GP was very understanding, I was fully expecting her to call me a maniac!Once I had described my symptoms to the GP, she instantly said that it was an inner ear problem, but took bloods to test for any other problems. Blood tests were all normal, B12, iron, Thyroid function (although on that I'm not convinced yet) And said the next step was to see the ENT.

My visit to the ENT was very different to the GP. I tried as best I could to explain my symptoms, but struggled somewhat. The ENT guy made me feel ridicluous, and said that he doubted that it was his area, said i had no inner ear/eustachian tube problems at all. He even asked me did I hear voices!! It was quite annoying though...

Anyway, he suggested that I go for the MRI and Audiogram, which bothe came back clear and normal.

Now he is sending me to see an Opthalmologist (sp?) for my eyesight, which I must admit is drving me potty, but I'm not sure it is the root of the problems.

At the moment I am about to leave my job as I just cannot concentrate at all anymore, and I nearly falling asleep during the day. I'm going back to my old job which uses the brain a lot less...

Sorry for going on, but I've seen some really helpful advice, and was hoping I might get some too!

Thanks for reading if you made it to the end.

 
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Old 07-18-2007, 04:41 AM   #2
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Re: Can anybody relate to? Advise? Explain my symptoms?

Jambuki,

Do you have any dizziness (spinning, imbalance, falling sensations etc.).
I can relate to most of your symptoms except the mucus and the nostril thing.

Out of interest, where did you go to the ENT?

 
Old 07-18-2007, 05:21 AM   #3
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Re: Can anybody relate to? Advise? Explain my symptoms?

Jambuki,

I have a lot of the same symtoms as you. I never really had any vertigo or dizziness where I could not keep my balance just the feeling of wooziness and like my brain is not operating at full speed. I went to 2 GP's and a well reccomended ENT and all are confused. The ENT said it was strange that I did not experience the vertigo before all the brain fog got going. I have been doing the VRT's found in the Charlotte's VRT's post and that has helped. I can still function fully everyday but just have this fog with me throughout the day. My symptoms get worse on stressfull days and stay bad for few days after the stressfull event.

Good luck! Mitch

 
Old 07-18-2007, 05:35 AM   #4
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Re: Can anybody relate to? Advise? Explain my symptoms?

Hey guys,

I have had no dizziness really apart from a spell of vertigo about 3 years ago. Out of all of the symptoms the fog/detached feeling is the worst. The nostril/mucus thing I have had for years adn years, 10+ so added it just in case. All in all I think I have these symptoms for about 6 years, albeit not so severe as now. The ENT was prof Curran on Adelaide road.

I don't hodl out much hope with teh eye specialist. But at this stage will try anything. I've had 4 sessions of acupuncture, but with no change at all. I'll keep you posted, fingers crossed!!

Cheers for the response.

 
Old 07-18-2007, 06:07 AM   #5
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Re: Can anybody relate to? Advise? Explain my symptoms?

Jambuki,

The fact that you have experienced vertigo does suggest that there could be an inner ear dimension to this, but as many of the posts on this board will tell you, inner ear problems are notoriously difficult to diagnose.

Let me know how the appointment with the eye specialist goes, I'd be curious to know if they have anything interesting to add.

So far I've been to a neurologist (in Vincents private). Had MRI and sinus x-ray but both were clear ..

Last edited by gmk77; 07-18-2007 at 06:12 AM.

 
Old 07-18-2007, 06:29 AM   #6
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Re: Can anybody relate to? Advise? Explain my symptoms?

Will do GMK77,

Funny you should say that inner ear is difficult to diagnose, my ENT consultation took 10 mins - tops. He looked up my nose and in my ears, that was it. When I said I had no recurring dizziness he basically questioned why I was referred to him, hinted that I was a looper and made an MRI appointment. Almost comical, bloody thing cost €220.00 too, so was slightly aggrieved! Seriously though, maybe I should be looking for a 2nd opinion soon...

GP was convinced at first appointment that it was inner ear related.

Will keep you posted on any developments.

P.S: Saw one of your posts on the sparks of light in your vision. (The way I describe it is like sperm under a microscope) I get that all the time, and more recently, an almost kaleidoscope like vision when sitting at the PC in work. Almost impossible to concentrate and very frustrating.

Another thing, do you ever get exhausted during the day? For about 2 months, I've been nearly falling asleep at my desk mid morning time, and even after plenty of sleep. Sorry for the questions, but I'm driven demented with this. Cheers again!

 
Old 07-18-2007, 06:55 AM   #7
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Re: Can anybody relate to? Advise? Explain my symptoms?

Jamuki,

I think most ENTs are generalists and don't always have specific expertise in relation to dizziness/balance. I've read about a specialist called a neuro-otologist (not to be confused with a neurologist) but I don't know if there is one in Ireland or not, I've never looked into it to be honest.

I do get fatigued sometimes - in the afternoon and towards the end of the week, but I work on a pc all day so I guess that's understandable.

I occasionally get the flashing lights and they are pretty much as you described, I also get 'visual snow' (look this up on ****pedia for a good description). One thing you should consider is whether you have migraine? There are complex forms of migraine that occur without headache. Some of the people on this board have had good results with medication for migraine. If your GP is good (sounds like it), he/she might consider trying something out?

 
Old 07-18-2007, 07:47 AM   #8
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Re: Can anybody relate to? Advise? Explain my symptoms?

Yeah, I heard about the Neurotologist myself. Like yourself, I had a look, but no luck finding one. I have just emailed the Medical Council to ask is there one listed. Worth a try I suppose. I'll look into the migraine too, my GP seems pretty open to ideas, which is good.

Have your symtoms ever subsided? Have you ever had any treatment, or even any hint of a diagnosis. I think I'd feel better if i at least knew what this was.

Cheers for your help mate, much appreciated.

 
Old 07-18-2007, 08:16 AM   #9
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Re: Can anybody relate to? Advise? Explain my symptoms?

The only treatment I've had is VRT (Vestibular Rehabilitation), these are basically exercises to help your brain compensate for loss of vestibular function. I think they helped a little at the time.

Most of my problems started after an attack of imbalance in May 2005 (although floaters and visual stuff pre-date that). I've had residual problems since then (spaciness, wooziness, head pressure, ear fullness, brain fog, feeling 'off'). I did notice quite a big improvement after about 18 months. All of my symptoms are still there but they're not as severe.

Neurologist diagnosed bppv. I don't tend to agree with this because I didn't have spinning type vertigo but I think he meant it in the wider sense that he didn't think it was a central problem but more of an inner ear thing, hence he referred me for the VRT.

 
Old 07-18-2007, 03:08 PM   #10
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Re: Can anybody relate to? Advise? Explain my symptoms?

Hello Jambuki,

The other poster is exactly right when they say you should look in to migraine. I have vestibular migraine - the symptoms of which can be very similiar to an inner ear problem. It sounds, from the accompanying visual problems, that you are more likely a migraineur than that your problem is inner ear. When you say that you get :an almost kaleidoscope like vision when sitting at the PC in work. Almost impossible to concentrate and very frustrating. this is a classic migraine symptom - a visual aura. Many people with classical migraine get them just before a headache. People with more atypical forms of migraine can get them all the time. I have also had the visual snow. Flashes of light are also migrainous. As is blurring of vision.

I get the horrible spaced out sensation when I am in an episode, which can last weeks at a time. Migraine also slows the brain down which is what explains the inability to concentrate/mental foggyness.

Migraine does not have to cause headache. It's true, you should visit your GP and look in to taking a daily migraine preventative which is how you deal with this type of unrelenting migraine problem. I take a beta blocker called propranonol.

best,
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Last edited by hbep; 07-18-2007 at 03:10 PM.

 
Old 07-18-2007, 09:08 PM   #11
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Re: Can anybody relate to? Advise? Explain my symptoms?

Jambuki - Do you have any allergy problems that you know of? Have you been tested for them? I too have a lot of the symptoms that you are describing and I am starting to wonder if some of them are related to allergies. Yes, ultimately inner ear - but the inner ear aggrivation being caused by an allergic reaction. I was recently tested and the results came back with severe allergies to dust and dog hair - which I have a LOT around me all the time. My problems started in March, and this was the exact time that a housekeeper started working in our home and I am wondering if all of the dust being kicked up from cleaning is causing me problems.

I just started immunotherapy in June and I am HOPING big time that this helps my inner ear freakiness.

 
Old 07-19-2007, 04:33 AM   #12
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Smile Re: Can anybody relate to? Advise? Explain my symptoms?

Hbep,

Do you think it could be the vestibular migraine even though I have these symptoms constantly and not in episodes? Sounds promising all the same, thanks for the advice. This forum really is a godsend, not only for the advice, but to know that I'm not crazy!!

I've only had one migraine in my life about 10 years ago. there were masses of light in my vision and dizzyness etc, but I've had no "conventional" migraines since then.

I'll definitely look into the possibility with my GP. What type of consultant would specialise in the diagnosis of this type of thing?

Thanks again Hbep!

 
Old 07-19-2007, 04:37 AM   #13
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Smile Re: Can anybody relate to? Advise? Explain my symptoms?

Missy7777,

I have had an allergy to dust as long as I can remember, it was tested when I was about 6 years old. Not sure if this would be linked to my symptoms, but I'd certainly not rule anything out as quickly as my doctor seems to

Will mention all of these things to the GP and see where it takes us.

Thanks again,

Is there anyone on the boards who has been diagnosed AND improved or even cured? Would be nice to know if that had happened...

Last edited by Jambuki; 07-19-2007 at 04:37 AM.

 
Old 07-19-2007, 07:27 AM   #14
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Re: Can anybody relate to? Advise? Explain my symptoms?

Cured for now anyway.
History: diagnoses, first BPPV, second V.Labs. I believe both could have happened, although I bumped my head really hard about a month before the last (of 4) 2 week Vertigo episodes. Possibility: crystals loosened from V.L. three years ago. Bump caused them to move out of place? Head position then triggered Vertigo while floor yoga excercises. (Had painful neck for about a week before episode.) Stayed in bed for 4 days, bec. nausea so bad and headache a killer. Day by day used a cane to keep from falling over. but could sit and work. Gradually 3 weeks, could go back out on the tennis court. Somehow that game has the VRTs built in. Lots of head motion and balance necessary for an active game.

Thanks to the board, BalanceC and blessed others, I did MEP at home twice a day. Had some spinning, but now clear. Once every other day for MEP. No other tests done on me in offices. So this is all hypothetical. But what the docs say and do is too, so ........????
I feel great. Only tinnitus left, which comes and goes and doesn't bother me too much.

CC.

Last edited by curiouscat02; 07-19-2007 at 07:33 AM.

 
Old 07-19-2007, 03:00 PM   #15
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Re: Can anybody relate to? Advise? Explain my symptoms?

HI there,

Yes it can definitely be migraine even though the symptoms are continuous. There have been a number of vesitbular migraine sufferers on here who have had symptoms for months/years. My symptoms were continuous prior to the medication.

The fact that you had a migraine shows you have that potential - namely the migraine possiblity is there, lying dormant and could than have flared up. Also interesting that you did experience an episode of vertigo and dizziness which would indicate the problem happened before then went away but has resurfaced in a more severe form - namely constant albeit without vertigo.

In terms of which specialist to see - it's tough because your'e in Ireland, if you were in England I could point you in exactly the right direction. The specialists in dizziness are called neurotologists - different from neurologists. They are a super speciality - specialising in the inner ear - and some doctors haven't even heard of them - although they definitely exist as many on this board see them. They will know about both inner ear issues and vestibular migraine and are the poeple most likely to be able to make the call. They do four more years training on top of ENT training in to the inner ear. Although the right neurologist could help you - it would really be a question of how up on vestibular migraine they are. I started in neurotology and was referred on to neurology .I now see both. However one of the neurologists I saw knew nothing about the whole spacey/dizzy angle - his thing was headaches and the mention of atypical migraine symptoms phased him. The other neurologists I've seen knew all about it. It's hit and miss.

For that reason I would recommened seeing a neurotologist first as they are the least likely to be flummoxed or phased by descriptions of spaceyness etc... They can also prescribe drugs for vestibular migraine. If you then need further input from a neurologist they can refer you on. This kind of problem - namely vestibular migraine - is normally way off most ENTs radar. It simply isn't their speciality and they end up diagnosing you with anxiety etc.. 2 ENTs looked at me like I was insane before I saw a neurotologist who diagnosed me. I was initially diagnosed with an inner ear problem and then my diagnosis changed to vestibular migraine.

You could try contacting VEDA - the vestibular disorders association - see if they know of a neurotologist in Ireland. Alternatively there is always the option of a trip to London. I am seen in the national hospital of neurology and neurosurgery in the neurotology department in Queen's Square, London, I am under the care of a fantastic consultant called Rosalyn Davies, -it is her you should be referred to. I know that some people on the board have made a long trip there. A couple of people on here from Scotland was diagnosed there. If you have been suffering that long without answers it would probably be more than worth it. I waited a year to finally get my diagnosis, the relief of actually talking to people who understood what the hell was wrong with me and didn't look at me like I was mad was amazing.

Hope all this helps,

best,
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Last edited by hbep; 07-19-2007 at 03:04 PM.

 
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