Greetings! This is my blog, dedicated to a strange medical condition which goes by many names, and of which the medical profession, at least those eminent professionals I have spoken to, seems blissfully unaware.
Up until 2008, I'd barely had a day off work sick. Since 2008 though, I've experienced a bizarre set of symptoms, which came on intermittantly (like a car with an occassional fault which the garage can never reproduce), but then which suddenly became persistent and acute, and with severe consequences.
The symptoms can be summed up in just a few words: persistent, unrelenting headaches, dizziness, vertigo, and acute driving problems.
Things became so bad in April 2010 that I had to stop working, and since then I've been spending my time a) trying to find out what exactly is wrong with me, and b) trying to find out how can I get better.
The bad news is that if other people's experience is anything like mine, the NHS in the UK seems to be utterly incapable of diagnosing the cause of symptoms such as these. I've had a wide variety of "diagnoses", some obviously wide of the mark, and have wasted months running around in circles, with scattergun treatment that has made little difference, or which has brought only temporary relief.
The good news is that, as I found out when I gave up on the medical profession in disgust, the answers are actually out there, once you start investigating, reading what's available on the internet and in various books, and analysing your symptoms (after all, you're always going to be closer to your symptoms than your doctor).
Since my symptoms came to a head, I've had the following diagnoses - either explicitly or implicitly stated - from GPs, neurologists, ENT specialists, Physios, Otologists etc:
Cervicogenic Symptoms (due to a neck problem)
Otolithic Vestibulopathy (an inner ear problem)
Positional Vertigo (i.e. BPPV)
Stress
Motorists (Vestibular) Disorientation Syndrome
The results from an MRI scan showed nothing wrong. The results from a first set of balance tests I had carried out indicated a problem with my right inner ear. The results from a second set of more sophisticated balance tests, while showing a weakness in my right inner ear, weren't apparently enough to explain my symptoms.
Well, that's enough for now.
Just to finish off, let me say that I have absolutely no medical training, and so I'm in no way qualified to reach any medical judgements, either about my own symptoms, or about the symptoms of anyone else.
All I am qualified to do is to discuss what I have gone through, treatment and exercises I've tried, and what has seemed to work for me (and what has made me worse).
If anyone other than me stumbles across my blog and is suffering from any of the symptoms I describe, it would be nice to think that by sharing notes, we could help each other out...
Dave
(In my next post, I'll try to outline how I came to diagnose the underlying cause of my symptoms myself, and what that diagnosis is. I'll also talk about the driving-related symptoms I suffer from, as these are in some ways the worst aspect of my condition)
hi, i have a problem that seems to stem from a bout of labrynthitis.. i didnt know what was wrong for ages and thought i was going mad. it only manifests itself when i either, drive downhill, or on a road with camber, or a steep bend, or over approx 45 to 50 miles per hour, at which point i feel like im on a rollercoaster and out of control. nhs gave me a few exercises to do, which didnt work. its worse at night when my eyes cant compensate too.
ReplyDeleteHello. I have that same problem. It's kept me off highway driving for the past ten months. Two years ago, my axis of vision shifted in my left eye. Recently, the spacial distancing has started to occur when I'm not driving.
ReplyDeletei know how uate feeling. ive been diagnosed with Meniere's disease 17 years ago up until recently after the first two horrible years my symptoms have been in remission. I have ringing in my ears daily that is so bad I don't think a normal person could tolerate it. I lost my dad this year in August and going back and forth from my state to his since June through January the last flight I was on I became severely ill with vertigo I can't drive at night anymore because objects are being not really thrown in front of me but whatever is in my peripheral vision I see in front of me I've had severe vision changes this year also going from a + 4.75 - 8.75 seemed miraculous my eye doctor doesn't know what to think it only lasted about a month and my vision was poor again he thought I was having blood sugar related issues but that is not the case I do have neck problems also bone spurs in each vertebrae in my neck I'm truly afraid to go to the doctor it doesn't bother me in the daytime only at night the vision changes sometimes is so severe I feel like I could pass out do you ever feel like that
ReplyDeleteive had ct scans usual tests. my ent sats its the inner eardisorder. i guess i was lucky to be in remission all those years. i cant have sugery bcz i have it in both ears. inner eear and optic nerve are soclose iguess thats the big issue. just wish there was something they could do.
ReplyDeletedave if u have any silutions today problem im all ears. im losing my boyfriend bcz i never feel like doing anything. stress makes it worse.
ReplyDeleteI was beginning to think I was going nuts. I've had migraines since my mid 30s but I didn't start having driving problems until one day coming down from the Sierras about 10 years ago and suddenly I just had this sudden anxiety. It only happens at high speeds and usually in taller cars unless I'm going down a mountain and then I just feel like I'm going to veer off. If I'm driving down a normal highway it could be ok but sometimes I feel like my side of the car is tilting and I want to hyperventilate. I used to be an ace at driving until that one day and I have never been the same since. Now I have to drive 90 miles on 3 different highways next week and I'm looking for alternative routes.
ReplyDelete