Looking for Answers (in all the wrong places...)

Hello, and welcome to my second blog posting. Not that anyone's actually discovered my blog yet, but I guess it's early days.

This time, I'll try to describe my symptoms (without being too much of a hypochondriac), and give a bit more of the background behind my eventual self-diagnosis, which happened in April of this year - coincidentally one year after I first had to stop working and go to my GP due to my condition.

To summarise what I said before, I've been unable to work for a year and a half now, due to a debilitating condition which the medical profession seemed completely unable to diagnose, although they were finally able to confirm what it wasn't - i.e. that it wasn't a vestibular (inner ear) problem. This actually contradicted an earlier diagnosis which said it was an inner ear problem...

I'm assuming (and I've subsequently been reassured from my research) that I'm by no means the only person in the universe suffering with my particular combination of symptoms, and so I'm going to try to outine them here - so that it might prompt a cry of recognition from anyone else who's going through the same sort of thing.

Persistent and acute headaches/dizziness/vertigo

I work (or worked) in IT, which involves long periods staring at a PC or laptop monitor. In April 2008, I was working on quite a stressful contract some distance from home. As the contract went on, I started developing severe headaches and dizziness, which seemed to increase the longer the contract went on.

The headaches and dizziness seemed to go together like bread and butter - I don't remember having one without the other.

Things came to a head when I was driving back one Friday on the motorway, and experienced a sudden dizziness and feeling of disorientation so bad that I had to pull over to the slow lane, drive really slowly, and come off at the next exit. I'll say more about these symptoms later.

Before this experience on the motorway, I remember having a really bad headache which seemed to "press down" on the top and back of my head. As I say, the headaches had been gradually getting worse the longer I worked on this contract.

I also remember vertigo as being a real problem during this period; to go for lunch, we'd have to walk out of our building and up a fairly steep slope in the car park to a cafe. I experienced real problems with vertigo walking up and down that slope.

For the remainder of the contract, I was unable to drive on motorways or dual-carriageways due to my ongoing driving-related dizziness, and so had to make my way there (about 100 miles) on small roads. My headaches and dizziness persisted, and got worse.

The other significant thing to say here is that I was using a laptop without a riser (very bad idea, as I now know), and also had a second monitor to the side of the laptop, so much of my time was spent staring at the second screen which was at an angle (i.e. my head was turned). Another very bad idea.

I managed to get to the end of the contract, but was in a really bad way at the finish. I checked myself into a local hospital while I was there to try and find out what was going on, but despite running a number of tests, they basically had no idea. They prescribed some tabltes, which made absolutely no difference.

Over the next couple of years, my symptoms persisted, although they did gradually start easing, and I was able to continue working, and was able to get by driving as long as I stayed off motorways, and minimised my dual-carriageway driving.

However, in 2010, my persistent hedaches, dizziness, vertigo and driving-related problems all started worsening again, until things went "bang" in April, and I had to give up working in the middle of a contract as things were so bad, and haven't worked since.

Strangely (or not), the deterioration in my condition coincided with the fact that, once again, I started using a second PC monitor at work (as they wouldn't provide a switch which would've let me use 2 PCs through one monitor). Hindsight's a wonderful thing, but I now know exactly how dangerous using a PC with your head turned for prolonged periods can be...

The various symptoms can be aggravated by using a PC for any length of time, sitting in certain positions (eg. in chairs with poor back support), and chewing or moving my head slightly (can bring on dizziness).

Driving-related "malaise"

The problems I experience when driving are a major aspect of my condition, and to some extent one of the most debilitating aspects. I've always driven long distances throughout my life - I've frequently worked long distances from home, and once, when I was working in Frankfurt, I drove my car over there towards the end of the contract to bring all my stuff I'd accumulated in Germany back to the UK.

Now, all of a sudden, I couldn't drive on motorways or dual-carriageways, and on occasions even driving on small roads was problematic.

The symptoms I experience are a feeling of dizziness/disorientation, panic, being out of control (as if I don't grip the steering wheel really hard, the car is going to veer towards the oncoming traffic and smash into it), and an "overwhelming" urge to pull over to the left and slow down. In April 2010, I was so bad when trying to drive back from work, that I was literally scaping the kerb on a number of occasions, so strong was this urge to pull over to the left.

Some of the other driving-related situations which could induce what has been called this "malaise" were driving on hills with a sharp drop-off to the right-hand side, driving in deep cuttings, which then give way to a wide-open space, driving up or down steep hills, driving into a sharp right-hand bend, oncoming traffic (or traffic approaching from the rear), driving on elevated sections of road, etc. etc.

Basically, driving became an ordeal, needing planning beforehand to avoid some of the obvious causes of the malaise, and even meant driving in the early hours, when the roads were at their quietest.

Various other strange symptoms

Oh, I've had all sorts of weird and wonderful symptoms, which may (or may not) be relevant to my strange condition. These have included:

• Occasional jaw ache - like toothache, but clearly coming from the jaw
• Occasional ringing in the ears, or even hearing "cutting out" for a few moments
• Persistent runny nose
• Lack of energy, feeling lethargic
• Neck pains, and general aches and pains from muscles in my upper back, shoulders etc.
• Problems reading, vision "skipping about" or blurry

And there are probably more which I can't recall at the moment.

 

Self-Diagnosis

Now that I believe I know what the problem is and looking back over my symptoms (plus having done so much research and investigation - even as just a layman in medical matters), the answer is just so obvious!

At the time though, as you're living through this terrible experience and are trying to get somebody - anybody - to tell you what the problem is and what to do about it, it's just so hard to know what to think; I know I kept bouncing from theory to theory, sometimes believing those in the medical profession who hinted (or just said out loud) it was all down to stress, sometimes believing I did have an inner ear problem (but why the persistent headaches?), and most of the time not knowing what to believe or think.

I had a significant number of medical specialists tell me that there was no point in me trying to over-analyse the cause(s) of my dizziness and headaches, let alone my problems driving; i.e. if the doctors didn't know, what chance would I, as a mere mortal, have of discovering what they couldn't...?

Luckily for me, I've never been that good at being told what not to do.

I've also been described as "obsessive" for keeping detailed notes of the profress of my condition, aggravating factors, diagnoses given, treatment given and so on. Well, pardon me for wanting to know what's wrong with me, and how I can make myself better (you know who you are, who described me thus!!)

If anyone does read this blog who is going through anything similar to what I've been through, and has hit such severe lows due to the incessant pain of the headaches, dizziness and incapacitating symptoms that the idea of just ending it all becomes attractive (as I felt on at least a couple of occasions), please, please, ignore the people who tell you not to over-analyse what you're going through or who say you are obsessive, and carry on trying to find out the answer - assuming that the doctors or other health professionals aren't able to tell you.

Well, this has been a longer post than I was expeting it to be. I'll end by giving some details of what led me towards finally finding out the cause of my condition, which would enable me to finally get some targetted treatment.

On one occasion, I went to my GP to ask to be referred to a spinal specialist, as I knew that even after extensive physio treatment (which included moving a deviated neck vertibrae back to where it was supposed to be), my ongoing symptoms were originating in my neck. I knew this just from the ceaseless aches and pains coming from this region.

She actually referred me to a musculo-skeletal physio, who carried out extensive stretching treatment on my upper back and neck. This, for about the first time, actually seemed to result in an appreciable, if temporary, improvement.

While I was receiving treatment from this physio, I was also doing a fair bit of research on the internet, still trying to explain the combination of headaches, dizziness, vertigo and driving problems from which I was suffering.

The breakthrough came when I started reading about the sternoclydomastoid (SCM) muscle in the neck, and some of the problems which could originate here.

More next time...