Discussions By Condition: I cannot get a diagnosis.

Help with unknown neurological or muscular condition.

Posted In: I cannot get a diagnosis. 2 Replies
  • Posted By: l1ttledb
  • December 22, 2012
  • 11:59 AM

Hi All,

For going on nine years now I have been suffering with a strange condition in the back of my head/neck.

The Public Health Service where I'm from is not great and I believe I have been let down by them. In the considerably long time I have had this they have not reached anything resembling a diagnosis never mind a solution and seem content to down play my symptoms while throwing pills at a condition they know little about.

I'm going to try to outline the problem and provide as much info as possible in the hope that maybe someone out there has seen or heard of something similar. Apologies if this gets long.

Ok so the three main symptoms are 1) a spasm causing my head the shake from side to side and 2) an intense muscular pain that is located right under where the occipital bone protrudes at the back of my head and 3) A tingling ever so slight tense feeling in the muscles located in the same place as described above.
The spasm was the first symptom to show and is not currently or has ever been constant. It happens sporadically but the muscles responsible feel as though they are constantly about to spasm, hard to describe this sensation; it's like a tingling tight-ish feeling.
The pain is a constant. It is a burning muscular pain comparable to if you were to tense your bicep for way to long. It can range from bearable to extremely painful.

I have had X-rays, CT and MRI scans, blood tests etc done and all were clear.
I have been on to many meds to remember but will list some. The tablets that have been most successful would be low dose amitriptyline with the second best being Inderal. I have had one course of Botox injections which was the most effective treatment of all, my doctors decided not to allow me any more for reasons unknown to me.

I believe I know what caused my problem but my GP and ex neurologist seem to disagree.
Back when it all started I was a heavy cannabis smoker. The shaking of my head started and would only occur while I was under the influence. I foolishly put it down to a minor side effect and continued using the drug for a few years.
Then, one day at work the spasm happened while I was sitting in front of my computer, totally sober. It scared me enough to quit using the drug but unfortunately I started to get the spasm more and more. The pain followed a few months later and I've had all symptoms ever since..
I realise that maybe I'm wrong in this assumption but it's the only logical conclusion I can come to.

Last few points. At the start I was young and ashamed of both my drug use and the thought that I'd harmed myself permanently so I didn't tell my doctors. Probably a big mistake I know but I've told them now and nothing has changed. They seem to barely consider it as a possible cause.

At first I was treated as if I may have dystonia but that was somehow ruled out. I was then told it was stress related, namely my mother had had a stroke a few years previously; I never bought into that theory because out of my brother and father I’m considered the stronger emotionally.
In saying that this condition has ground me down to nothing over the years. My social life is non-existent at this stage; I’ve dropped out of two degree courses and quit work. I’m probably depressed but haven’t seen anyone and have had some pretty scary thoughts which I’m sure you can deduce from the context of this paragraph.

It was then labelled tension headaches and despite my constant protestations that my symptoms were nothing like a headache this kind of stuck.

I am both angry and extremely frustrated at the way my health service has treated me. I would love nothing more than to go privately to the top neurologist (or whatever field deals with this) I can find but unfortunately I can’t afford to. It seems where I’m from it most certainly isn’t the classless society it sometimes claims to be.

That's it. There is more to the story but my post is long enough. I'm going to post this in a few places and maybe something will come if it however small the chances are.

If anything is unclear or you have any questions please don’t hesitate to ask

Thanks for your time

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2 Replies:

  • Have you had any trauma such as being rear-ended in even a minor collision or a sports injury or other injury that involved hurting your neck? You may have compression of the suboccipital nerve. A chiropractor, especially one who specializes in an upper cervical technique is your best bet.
    Anonymous 42789 Replies
    • December 29, 2012
    • 03:45 AM
    • 0
    Flag this Response
  • Hey,Thanks for the input but no nothing like that. Very first instance was the spasm whilel under the influence of cannabis probably 9 years ago now. This then began happening more often (while under the influence) then eventually happened while sober. The pain came a few months later and i've had both since.I have actually been to a chiropractor, as well as got acupuncture, massage, physio and a few other "non-traditional" treatments. This is probably part of the reason my OP is slightly emotional, ie I feel i have exhausted everything and i'm still stuck dealing with the pain etc.Thanks again
    l1ttledb 1 Replies
    • January 4, 2013
    • 02:27 AM
    • 0
    Flag this Response
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