Hi,

I'm new to this site/forum. I'm looking for help and advice. As I sit and write this I am in tears!

I'm a 31 year old Male from the UK. Upto October last year never even took a headache tablet. Then my life took a complete turn !!

It started off as a kind of altered conciousness. A 'Brain Fog'. Pressure behind the eyes, altered hearing. This would come and go. It would last sometimes 10 minutes, sometimes an hour or two.
At first I didn't think much of it other than 'that's strange'. Must be something I've eaten or some kind of allergy (I've never been aware of any!).
As things progressed (Oct last year), things got worse. I noticed that when I leaned over, I would feel light headed and dizzy. When I returned to an upright position, normal again!.
By now, this was starting to freak me out. It was two days before we were due to holiday (sorry! vacation!) to U.S.A (Florida). This is our second home.

When we arrived in USA, I noticed dizzyness when leaning over was getting worse. By this time I was so concerned that I went to a walk in medical centre in orlando and described my symptoms.
After a medical examination (basic), the doctor dx everything from Otisis Media, Ear infections, Sinisitus etcf. Basically, I don't think they had a clue! (This was to be the beginning of my frustration with the medical world!). Anyway, they prescribed Meclizine (for dizziness), an antibiotic (for inner ear infection?) and Gaufien (an expectorant?). After taking these for a few days, the dizziness when leaning over subsided. I was still left with the altered sense of conciousness (eg when going into Supermarkets it would start!).

We took various internal flights in the USA to visit family in Albany N.Y and then back to Orlando. After the third week, we flew home to the U.K.

This is when the real stuff started. When we landed. I just sat in the airport lounge with my head in my hands feeling dizzy, spaced out, fogged, confused, depressed and as If I couldn't go on.

Once we got home, I immediately went to my GP's to explain what was wrong. He did a few tests and ordered a full blood workup and hospital evaluation. I was discharged the same day with no dx or further help.

Over the next few months, the fog/pressure got worse to the point where I was off sick from my daytime job (Computer Analyst), packed in my nighttime job (DJ), and totally withdrew from social activity (not that I had much time for it anyway!).

Things got so bad that I paid over £3000 in private fees/medicine to get this thing diagnosed. Nobody seemed to have a clue (although Viral Labyrinthitis was a possible dx by a couple of doc's). After reading up on symptoms, it didn't seem to fit. A typical symptom of V-Lbt's is Sickness/vomiting, vertigo which is improves by bed rest and a complete recovery prognosis of 3-5 weeks. Although I felt dizzy/spaced out, I didn't have true vertigo but did have a whole host of other symptoms. By this time, the Tinnitus had started. This really freaked me out. Not sure if this started because of all the med's but then the depression/anxiety kicked in. I was on the internet at every opportunity (work, home, anywhere!). I kept trying to mach up symptoms to my illness. I was convinced that I had a terminal illness. I had IBS, numbness, chronic insomnia, constantly crying/mood swings, tinnitus, clicking/pressure in my ears. The most annoying fact of all 'I looked completely normal!'. I was breaking apart inside but couldn't explain to anyone all of the internal things that I was going through.

Four months later, the brain fog/dizziness subsided but I was still left with some disequilibrium on turning head, standing/sitting. There is definately a congitive dysfunction to this as well. I struggle with short term memory (apparently this is a symptom of depression?).
I had a Brain MRI, completely normal, full blood work, thyroid checked, hearing tests, nasal endescoptomy etc.etc. A Barrier of test! All came back normal!. In the end I made an appointment to see a Neurologist just to make sure. He checked me out with the usual tests (walking heal/toe, balance etc) and made a diagnosis of probable Viral Laberynthitis. Since then I have had a dx of TMJ (Tempromandibular Joint Dysfunction), Mild Carpal Tunnel Syndrome (I wake up every morning with numb hands and fingers) and Major Depression.

Well, it's 8 months on since the initial start of all the symptoms, and what I have left is (mild tinnitus - probably just the same but less bothersome now!), Carpal Tunnel, TMJ (no clicking just mild jaw pain and Bruxism (grinding of teeth at night), and Maror Depression along with Generalised Anxiety Disorder.

I am still on the internet convinced that this is all leading up to some terminal or chronic illness (even though docs have ruled out any pathalogical terminal illness!).
I cant help going on the internet every second of every day. At the moment, I'm convinced that I have early onset parkinsons disease (even though I don't have tremor but do have joint pain at knees and bad posture) or MS, ME (CFS) or even FMS (Fibromyalgia). I go though day to day thiking nobody likes me and am constantly mind reading, avoiding people and cant stop thinking about health Anxiety.

Could there be something wrong with me (they say 40%-50% of people with depression could have an underlying condition?) or is this all just depression and out of control anxiety?

I have been on prozac in December/Jan ' 20mg daily but came off due to adverse side effects (very strong suicide thoughts. Ended up in Emergency Room trying to convince them that I wanted to die!). Since then docs have put me on Dothiepin @ 75mg nightly (apparently this is one of the drug's of choice for Depression/Anxiety/Insomnia).

I've been on it for 2 months now and I don't feel any better. I cry at the least thing. Still feel that my life isn't worth living, have no friends, feel my view on life has changed, feel worthless, no self-esteem etc.etc. The doctor is upping the dost to 100mg nightly on Monday.

Is this all just Health anxiety, Depression, some unknown illness, or just out of control anxiety (post viral illness?). After all, I never had any doctors visits prior to all this starting.

I'm really sorry for the length of this post, but I wanted to explain how I got to feeling the way I do......

P.S I've tried every treatment possible. Accupuncture, Reflexology, Massage, Phsychotherapy, Chiropractors, all with temporary sucess. Since them all, I now have neck pain. I've noticed crepitus (grating noise) when I turn my head (also have limited range of motion). I have fullness in both ears most of the time and find I have to hold my nose and blow to releave pressure. Here I go again, I'll be trying to look for underlying conditons with these symptoms this afternoon!

I Need help. I hope I haven't posted this in the wrong forum.

Thankyou & god bless!

Michael.

hi,
i have had all this and then some, have you looked into eustachian tube problems? in the end it turns out i have patulous eustachian tubes and they think i had inner ear virus last fall. look into eustachian tube problems, may just need a set of tubes to straighten things out. good luck! lib

Hi dj-mike,
Hope I can give you some comfort about your condition by talking you through mine. Mine also began like yours and the symptoms got worse, at the begining it started with a sinus infection to which I was given anti-biotics, I started getting that spaced out unreal feeling and pretty much the rest of what you had explained I thought I was dying or had a serious illness, I even came of the anti-biotics as I thought they where the problem. I put of going to see my GP afraid of what she might find out, then finally I had enough so off I went, after a basic examination I was told I had a lot of fluid in my left ear, and was given the usual drugs to correct balance etc., they didn't work so again I got them changed (3 times!!) still nothing helped so I began to think "theres something more serious wrong here, cause I had spoken to people I knew who had inner ear problems and they didn't have my symptoms". I then began to get a shortness of breathe and a thumping feeling in my chest, I thought OH NO heart attack or something like it, every day I got up, all day long this was all I thought about, I felt I was going to die, or was going crazy!!! I even ended up in casulty on a heart monitor and had every blood test and x-ray going, everything came back normal. I still felt scared to death (wonderful what the mind can conjur up) so off I went and paid private to see an ENT specialist, he told me I had at one stage burst my ear drum and had a lot of scar tissue inside, he asked had I had any pain and I hadn't, nor did I have the usual fluid leakage etc. So you would have thought this would all have put my mind at rest NO IT DIDN'T!!! So off I went again still convinced I had heart or lung problems or something along those lines, my GP told me I would get better this would pass in time and I'd be ok. Still not believing I went to a hypnotist because I had since discovered that inner ear problems can lead to panic/anxiety attacks, or depression, he didn't help, nor did the tapping therapy or the rest, nor the diazepam!!!! So round and round you go in a vicious circle looking for answers and even when you get them it still dosn't cure your problem, so now rather than give you a miracle cure I'll tell you what I do and still have to do everyday.............accept the fact that your not ill, your not going to die, there is nothing serious wrong or you'd have gotten worse or keeled over by now!!! from your inner ear problems it has started another problem anxiety, panic, fear, depression.....doc's can give you drugs to cure your ears (even though it takes a while) they can also give you antidepressants etc. and along with these you have to retrain your mind to saying I am safe I am well I am alive and I am going to be ok......repeat everyday all day if you have to.. I dunno maybe it will help, I wish you all the best and try hard to be positive theres a life out there to be lived and you can beat this!!!!

Melissa.e

I stayed dizzy for about 6 mons.--went from dr. to dr. -finally was tested for allergies and started shots. Things got better, except when I had a cold and then I would be extremely dizzy. When the cold got better, the dizzies went away. Then two years ago, I woke up sooo sick--dizzy , nauseated, and out of touch with the world. Went to my regular dr. 4 times. He finally told me that he didn't know what was wrong with me-but to go out and have fun. Right! I couldn't drive, had to sleep in my clothes some nights because I couldn't walk. I had to go to my sister's to stay the summer and her dr. sent me for an MRI and blood tests-all ok--but he believed me-kept saying there is something wrong with your ear. I finally got better-after losing 20 pounds. It took about 4 mons. The next May, I got a horrible cold and it all started again. I got an appointment at the Med. School and had the whole battery of tests--ENG, hearing, balance--found my equilibrium was all over the place and had borderline nystagmus on positional tests. I knew I had hearing loss due to chronic ear infections when I was a child--had radiation treatments on my ears as a child. The ENT suggested I go to a neuro. The ENT said I had very "strange" symptoms!!! Meaning he didn't believe me. I decided that I was going to find out that summer just what was wrong with me--Visit to the neuro --who was very understanding- proved that I didn't have MS or tumor. Had MRI, carotid, BAER, ambulatory EEG, and several other tests-Found my brainstem was slow to respond-He thought I was having transfer migraines-gave me medicine-had a horrible reaction to the med. He sent me to an infectious disease dr.--nothing. So I decided that I would resume my life---thinking if I fell out at work or had an accident that maybe I'd get some help. Then I asked my new dr.---love her--if I could take VRT--she said by all means-that dizziness was a horrible way to live. She has a friend who has it---so she believes me. I do think VRT has helped me. I do the exercises every day and have signed up at the rehab center, where I took VRT. This way I can use the equipment that we used. I do take a fluid pill, which has helped. I know the frustration with the lack of understanding from people and the med. profession. They all want to say ---oh you're depressed or anxiety. I told the ENT when he said that-you would be too if you couldn't drive or have any kind of life. The therapist told me to carry on--doing exercises that make you dizzy is good, because it teaches your brain to do things the right way. I have good days and bad days. Now that I know I don't have MS or a tumor, I know it's my ear. I get depressed, but try to think of people who are worse off than me. It's very frustrating. Try VRT.

Hi: Did you ever get an accurate diagnosis? I read your lengthy description and the fullness in your ears and the dizziness matches up with Patulous Eustachian Tube but so many of your other symptoms do not. i wonder what kind of ear tests you have had since your scan and blood work came out normal. Keep us posted--don't give up hope because I think I know that feeling of dread that it is something horrible or terminal --it can be very frustrating and depressing to go to doctors sometimes when their listening skills seem limited and you are getting pushed out the door after 10 minutes. I go in now with a written concise summary and try to have my questions listed--no more than one page so it isn't daunting but easy for them to be sure to meet my needs before leaving. it took me years to get a correct diagnosis so persist on finding the right doctor for you. Once your sure of the diagnosis then you can find the right chat group to get support and understanding from others who suffer the same symptoms.

You might check about Menieres - my daughter has it and also alot of your symtoms. This takes a very thorough hearing/ear exam to discover. Luckily my daughter is an audiologist and worked in a training lab at a university here so she was diagnosed almost immediately.

Good Luck!

Mould spores and other little beasties lurkin our air conditioning. When summer comes around and we turn on the air conditioning for the first time again, we breathe them in. This creates plugged sinuses and in the end the nastie little things take up residence. Best of the luck.

I'm going to throw my vote in with Mich. I think it's MENIERE'S SYNDROME.

An aside, I had viral labyrintitus...slight symptoms can linger a long time. Personally I don't think these conditions are completely different in spite of what the literature says.

For both conditions, meclizine is VERY helpful.

Be grateful, Mike, that you don't get the nausea...there's NOTHING quite like it. Death seems an up!

What do you guys eat ? has no one even looked at diet ?

Your body is only able to heal itself through the use of nutrients that we eat. also it has to deal with any toxins / poisons in the food you eat. if your body has an extra condition to deal with. then that of a "healthy " person. perhaps you should focus on your diet . i'm no nutritionist or anything but if we don't eat well we can't expect to live well so i'de take a hard look at your diet.

What do you guys eat ? has no one even looked at diet ?

Your body is only able to heal itself through the use of nutrients that we eat. also it has to deal with any toxins / poisons in the food you eat. if your body has an extra condition to deal with. then that of a "healthy " person. perhaps you should focus on your diet . i'm no nutritionist or anything but if we don't eat well we can't expect to live well so i'de take a hard look at your diet.

i've had some similar problems with numb hands and energy level, lightheadedness . though mine seem to be entlirly work out related... i'm just not examining my diet as a possible cuase to my issue.

theres obviously something wrong but id say most of your symptoms are psycological (try and remember this).ive suffered the same way for 7 years undiagnosed and bereft of hardly any medical investigation(until recently)due to my gp's not believing me.the knee joint pain is probably the result of unbalanced walking(ive got exactly the same problem,to the point my knees hurt after 5 minutes on my feet)the depression,anxiety,social isolation are all symptoms i can empathise with mate.just keep seeking answers for the initial problem(dizzyness,brain fog)as im convinced all the other rubbish suffered is a bi-product of this.let me know how you get on and ill do likewise.im going to see my second nuerologist next week.as refered by my gp(eventualy) then its onto ENT specialists.all the best