Am I worrying about nothing?

[leila]

I have had painful headaches and facial pains on the left side for several years now and have been diagnosed with migraine, tension, cluster headache, and finally trigeminal neuralgia.  My eye gets irritated, my face aches, I get pain in upper jaw. Amitryptiline for the neuralgia seemed to help, but I thought it was causing weight gain and tinnitus in my left ear, whilst taking it, so I stopped.  Recently, the headaches have come back (thought they are always in the background) and the tinnitus - a high-pitched hissing/whine - has become more obvious, though I can tune it out most of the time.  All symptoms are confined entirely to the left side.  I also have odd pulling and 'numbing' sensations inside one side of my head and on the face from the upper cheek to upper lip and around ear area.  The tinnitus seems more obvious when I'm tired or ill (I also have chronic fatigue syndrome to complicates matters).

Last week I had a headache, 4 days out of 7 and had to leave work to go home once, the pain was so distracting.  On another day, I had a headache in town, whilst walking around, and I felt odd sensations in my left arm/hand and down the outside of my left leg to the foot.  I felt a bit odd walking and my left leg seemed to be weaker as a result.  None of this seemed cripling or major, but I don't know if this was connected to the headache or not.  I've had the leg thing before and assumed it was sciatica, though in this instance I was not aware of any back discomfort.

Should I be concerned at these symptoms?  I don't want to hassle my doc. unecessarily. Jule

[CCF-Neuro-M.D.-CS]

I would recommend that you have a consultation with a neurologist, and preferablly with a headache specialist. Your headache history is quite complex, and without asking you questions and examining you I could not provide specific answers. However, I do think you need to have this formally evaluated. Good luck.

[leila]

Thanks for your reply.  It is much appreciated.  I guess my difficulties are whether I should ask for a referral to a neurologist or not.  I have been to my GP several times with headache problems and I feel they don't think it's a major problem - just pain.  If a neurologist was appropriate, wouldn't my GP have suggested it?  I haven't mentioned the strange numbess sensations before, but I get the feeling it wouldn't matter anyway, unless there was something to see. I have never seen a neurologist, nor had any scans of my head so have no idea whether it would be in order.  I have to say, that unless there is something specific there that you think should trigger a referral (or, I request one - probably counter to my GPs advice), I won't get referred.  Another factor is that waiting lists are at least 6 months here for most specialities, once referred.  Could you advise please?  As I have CFS too, my GP probably thinks I already make too much use of the NHS and am a waste of precious resources!  I also don't want to waste anyone's time unecessarily if nothing can be done anyway.

Thanks again!
Julie

[hewie]

Julie,

If you're still checking your post for replies... by all means, request a consultation with a (research to make sure a good one! so as not to waste effort!)  a GOOD neurologist.

Your symptoms are obviously neurologically related, and your pcp should not balk and care enough to give you the referral.  That's what doctors are there for!  Going to them may be a waste of your time but should never be considered a waste of theirs.  That's their job and their commitment according to the Hippocratic Oath!

It took me a long time of suffering and thinking the docs know more about what I feel than I do and sitting passively back to learn this!  And now I am really ill -- I waited too long.

You will find good and bad and nice and inconsiderate and on and on doctors out there -- they are just people.  But for goodness sake, this is your body and your health and we in this country really need to learn to take a more active rather than passive approach to that!  If a doctor gets offended that you are trying to find out why you are ill...then what the heck!  get new one - it's their job to try to help you ... you would do that for any other professional service...right?  Then why not your health.  

Why in the heck in this country are we so afraid of doctors.  don't just hand your life to them in a platter.  It is yours... this is the computer age... research, check them out.  Don't think for one moment they won't do the same when the tables are turned and it's their time to try to find out what is wrong with them!

=)

[leila]

Thanks for your comments Hewie.  If you are still reading this, I'd be interested to hear your story if possible.
Jule