Trigeminal Pain and Lupus

[C King]

I have SLE (7 years).  I have just been diagnosed with having CNS involvement.  Symptoms: vertigo, tingling in hands, numbness in various parts of body, buzzing in jaw, numbness and neuralgia in left side of face, tinnitus and 'vibrating' feeling in whole of body and feeling 'vague and confused'.  Diagnosis was possible cranial nerve and brainstem involvement of SLE.  LP very non specific: showed inflammation in spinal fluid.  MRI showed a long-standing infarct in area not related to current symptoms (put down to migraine?? or brain involvement prior to SLE diagnosis).

Put back on Imuran 150mg (came off it 4 months prior to this recent flare).  Given 3 steroid infusions and oral dose of 10mg Pred.  Symptoms have settled quite a bit.  Have been left with periodic vertigo (not so much a 'spinning' now, but a violent 'shake' at times and a frequent 'gentle rocking sensation'.  Neurologist put me on 500 micrograms of Clonazepam to stop 'nocturnal buzzing' in head.  My rheumatologist is suggesting I come of it as I am contemplating possible future pregnancy.  Have been told I can stay on Imuran for pregnancy.

My main problem is the pain (trigeminal???  I had a 5th cranial nerve palsy) in my face.  GP has given me Dothiepin 50mg...and I take Solpadol 30/500.  I get horrific pain in my teeth, gums, face, tongue (tooth pain can be unbearable).  Meds don't seem to give me much relief.  Can you suggest suitable meds for this?  Will coming off Clonazepam make it worse?  Can I get pregnant on Clonazepam and any drug that you may suggest for pain relief?  Will not be seeing neurologist until December...he has left me in the care of the rheumatologist and would like some advice on relief of this excruciating nerve pain.  I am highly allergic to sulphonamides, which you may need to know (?)

Many thanks.

[CCF Neuro[P] MD, RPS]

thanks for your comment.

CCF Neuro MD

[John Street]

I have a good friend who was recently cured of Trigeminal Neuralgia using the Gamma Knife therapy available at Cleveland Clinic.  

He was previously controlling the intense pain through the use of Tegratol and is now drug free and pain free.

[CCF Neuro[P] MD, RPS]

Dear Chris Adams:

I am not sure what is causing your muscle spasms (I have not seen your MRI scans, done the examination, talked to your neurosurgeon).  I would tell your neurosurgeon what is going on, likely is the residual effects from the multiple surgeries.  In some cases, surgery prevents further damage while only solving part of the initial problem.  I am not sure what is happening in your situation, but your neurosurgeon will have a better idea.

CCF Neuro MD

[chris adams]

I have had three surgerys 1st c56 c67 c54 its been a year now sence the surgery  teeter back and forth  with pain all the time they seem to be mucsle spasam that send me to hospitable    
they give me morphine shots the my wife packs me intop thr car and take s me home shes the best.  Ive been four times in last 5months  the he mucsle that hurts most is the one that runs  down right side of neck.any comments     thank you

[CCF Neuro[P] MD, RPS]

thanks for your comment.

CCF Neuro MD

[How about acupuncture?]

Have you tried acupuncture for the TN?  It worked on mine.  I am an acupuncturist. It would be OK to do during pregnancy as long as the practitioner does not use any contraindicated points (labor points).  I am Board Certified.  Type in NCCAOM on internet to find someone Board Certified in your area.  Good luck.  Maureen

[CCF Neuro[P] MD, RPS]

Dear C. King:

Actually the best medication during pregnancy is none. I am sure that all your doctors have told you this and you have excepted the risk of taking medications and having a baby.  Neuropathic pain of trigeminal neuralgia can be difficult to treat.  Most of the medications we use for this disorder tegratol and neurontin have been shown to produce defects in the fetus in tegratol and in animal studies in animals in neurontin.  However, it should be noted that with tegratol, the lower dosage and the use of folic acid (which you should be taking anyway) have limited birth defects, but they are still present.  Knowing the possibilities, you will have to make the choice.  Please consult your OB and other physicians when you before you finally make a decision.

Sincerely,

CCF Neuro MD