Feeling lost
 

I started getting facial pain about 2.5 weeks ago which my GP has tentatively diagnosed as trigeminal neuralgia but I had also by the time I saw the GP a week ago developed a numb sensation on my face and scalp, and down my neck, shoulder and arm. This is all on the right side of my body only. GP has referred me to neurologist as he is not sure what is going on, and given me Carbamazepine (200mg a day) for the pain.

Since then the numbness has spread to my hand and I have developed constant, unpleasant tingling in my right hand, loss of co-ordination when using my right hand (typing this message is sooo slow!), occasional odd light/weak feelings in my legs, and unsteadiness when walking. Could any / all of that be a side effect of the carbamazepine? Or a progression of whatever it is I've got?

Honestly I haven't noticed any change in the face pain from the Carbamazepine, although ibuprofen does help with the pain. I'm tempted to discontinue the Carbamazepine and see if the tingling and unsteadiness ease off a bit, especially the tingling as this is making everything I do so much harder and is driving me absolutely crazy. But I am worried that this would be daft...

Have talked to two GPs about this and they don't have much experience of TN or PN, so I'm not sure either of them really know much more than they've read on the internet. And I can't see the neurologist until next month. This whole thing is making me feel seriously miserable and helpless - I realise others do have much worse symptoms than me, I suppose I am just not used to being ill or feeling "disabled" - and I don't know what to do.

Any thoughts, suggestions, reassurance?!
Thanks in advance.

I have great sympathy for you; and the wait game is something sadly that you have to participate in to get the needed help you deserve. The reassurance is you can find great :grouphug: support here; and that you are taking the right steps in getting the medical help your situation calls for....:cool:

Thanks, a bit of sympathy goes a long way :)
Have to learn to cope I suppose, and not to feel to sorry for myself!

Nevertheless, decided to quit the carbamazapine, for a day or two at least, to see what happens. It will drive me mad to keep questioning whether the medicine is causing more harm than good so I think I have to put it to the test if only for my sanity. If the pain gets worse and the tingling etc don't improve then I will at least have learned my lesson there!

Your pain is real; and I wouldn't say feeling sorry for yourself is all bad...don't let it stop you from moving forward, but give yourself some credit...and acknowledge you are it true pain.

Keep us posted on what you learn about quitting that med....

And--
 

--given the genesis and spread of the symptoms, this sounds like you should have a little investigating done on the upper cervical spine--perhaps an MRI to check for any stenosis or compression, as symptoms of peripheral nerve problems can be exactly mimicked by those caused by spinal or central nervous system conditions.

Keeping a journal
 

Hi Ariadne,If you keep track of the symptoms and pain levels and the dates before you do interventions on your own it may help. I have had GP's try to give RX for medications that I had already tested out of. With the passage of time and the search for help, it will fade from your own memory and confusion will cause backtracking. Hopefully your road will be short and relief around the bend. If not, at least you can look back and see. You can use a journal to test effectiveness of supplements, treatments,special excercises, etc. Watch for withdwawal syndrome on some things, I've heard that Cymbalta is tough, Hydrocodone was bad for the first 48 in my case. I applaud you for taking initiative. Good Luck, Ken in Texas.

Thanks Ken. I have started keeping a journal of symptoms etc for exactly that reason :)

I have TN and I'm on Carbamazepine. Unsteadiness might be from the med but I doubt the other symptoms would be attributed to it. Also, ibuprofren shouldn't help with the face pain if it's typical TN. I think an MRI of the brain should've been ordered by your GP. I know you're scared and feel helpless; I know all about that. But unfortunately the only thing to do is the next step. I don't know your age/insurance/financial status but maybe you can call the GP and have him order an MRI -- or at least ask why he didn't in the first place. This way you can have the results in hand to bring to the neuro appt. It beats waiting and gives you something productive to do in the meantime.

And don't do too much symptom surfing; it will only worsen your anxiety.

Thanks. I don't think it's TN. Symptoms don't quite match as typical, carbamazapine didn't help with pain, and ibuprofen definitely helps. I'm 37 too so TN unlikely at my age!

Discontinued Carbamazapine and it made no difference to facial pain which tbh is no longer a big issue right now - ibuprofen has it under control. Main thing now is tingling, numbness in hand. Other symptoms still there but hand is worst problem as it is quite disabling day to day. (On plus side my left hand becoming nifty of necessity!)

Going back to GP tomorrow for another looksee.
Am in UK so insurance not an issue - God bless the NHS.

Welcome dave8. :Wave-Hello:

Hi Ariadne,
 

Have you checked out thoracic outlet syndrome, same site different forum? See if reading some of the threads ring a bell. Unfortunately it is not always easily diagnosed by MRI or electrodiagnostic testing. Worth a look.

It's good to be off carbamazapine; from a side efx standpoint, it's bad news. And if you really had TN, your description would be of a much more severe pain. But I'd still get that MRI asap. Do you have any general weakness or unusual fatigue over all? Any balance issues?

They still don't know what I have (besides TN). I went from MS to cancer (paraneoplastic syndrome) to now maybe ALS or some other motor neuron disease. I'm still hoping that it's 'only' some form of neuropathy.

Had a good talk to doctor today :)
He's agreed carbamazepine not for me.

Going to try amitryptilene(sp?!) for pain and to help me sleep.

Also antibiotic in case there is an infection going on in lypmh / glands as my neck and ear have both got some tenderness & swelling. The fact that ibuprofen helps might suggest something swollen or inflamed is causing a problem.

And has ordered an MRI.

Feeling hopeful that the right steps are being taken :)

Amitryptiline is anti-depressant that's sometimes used for neuropathic pain. But unlike ibuprofen it doesn't really reduce swelling or inflammation. Despite cutting out the carbamazepine, it sound like your GP thinks it's nerve related.

Had you been sick prior to all of this? There's something called "Post Viral Syndrome" that can cause the symptoms you're experiencing.

There is also some new evidence that amitriptyline may encourage peripheral nerves to regrow:

http://neurotalk.psychcentral.com/post529063-1.html

No I wasn't ill before this started.

Dr said on amitriptyline that it will help me get some sleep and can also benefit nerve pain. It is deffo nerve pain I am experiencing, just that there is a possibility the cause might be to do with an infection e.g. something swollen pressing on a nerve or something. Frankly I think the antibiotics are worth a try even if that's an unlikely cause - right now I'd try just about anything!