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Avatar universal

seeking advice on diagnosis, treatment options

My headache problem seems to have begun with surgery for a brain aneurysm in December of 1998.  Sine then, I have had a constant (24-hour a day) severe headache.  I had migraines before the surgery, but not like this, and this pain is somewhat different in nature, so I do not believe it to be migraine.  I have consulted my neurosurgeon (no cause and effect, according to him), two neurologists, an oral surgeon, and two pain clinics, University of Virginia and Hampton (Virginia) Sentara.  I have tried the standard neaurological mediacations, such as Paxil, anticonvulsants, and Neurontin and Lamactil.  All make the pain even more severe.  No one has been able to determine the cause, or diagnosis, nor how to treat it, except to take barbituate painkillers every four hours around the clock.  Even these are not helping enough to keep me going, and I am currently unable to work, plus unable to qualify for disability due to a lack of diagnosis.  Does this condition relate to the anuerysm surgery, of should I be looking for some other cause?  Do you kmow where I might do further research and try to help myself--my current pain clinic doctors admit they're stumped.  I have had CT scans and x-rays, but cannot have an MRI due to an implanted arterial clip.  Are there other tests that might show something?
20 Responses
Avatar universal
Dear Sue:

There is a headache type due to aneurysm.  Did your aneurysm bleed and where was it located?  The blood irritiation would cause headache, also the hemisiderin that results from the bleed might also irritiate the brain to cause headache.  Most neurosurgeons only use clips that are MRI safe, and yours also probably did as this is standard of care in most places.  I would check with him/her to see if your clip was tested.  I think I would try the usualy migraine stuff, but I would start with indomethacin as it might be more effected.  A good place to begin is elavil at low doses at night with indomethacin for breakthrough headache (although maybe a trial with daily indomethacin once the elavil has gotten to steady state if the headache remains).

Let us know what happens.

Sincerely,

CCF Neuro MD
Avatar universal
Since young childhood, I have had the following habits:Thumb sucking (and
Avatar universal
oops - sorry, message in wrong place!
Avatar universal
In Aug. of 98 I start with tingling and numbing felling in my feet. Then the burning shortly after that, which became very intense, to the point that I thought I had blister on my feet. After a few days, blisters did apear on my right foot, they lasted about a week. I was under Dr. care but, no one knew what it was until I went into NYC to see neurolgist[Nov],who said he thought it was shingles. He did a nerve and musle test and found damage at L5. It is now 1 1/2 later and I still have nerve pain. My left leg has always been the worse. This does not make any sence, since the blisters where on my right leg. I now have some numbness in my uppper left thigh. It feels like it is progressing up my leg. I have had mri of my spine and head, blood test for diabetes, limes, and antibodies deases, all, , came back negative. My guestion is, has anyone heard of anyone who had shingles on there feet, and if so what are they experencing. I can't find any information on it[shingles on the feet].    Thanks, Barbara
Avatar universal
This is to Liz,

I am not a doctor so take it for what it's worth, but what you describe sounds like classic tourette syndrome. You may want to do a search on Tourette syndrome and look up what it says about it.
Avatar universal
To Liz: look into Obsessive-Compulsive Disorder...There are very effective meds for this.  

To Sue:  My husband has also had a 24-hour, 7 days a week headache since March 1999.  He, too, is unable to work, due to large amounts of medications.  He's been on MS Contin (and various other opiate pain meds), Indomethacin (anti-inflammatory), Elavil (tricyclic antidepressant), Atenolol (beta-blocker), Demerol shots (another opiate), Toradol shots (anti-inflammatory) with oxygen supplement.  

His current medication roster is as follows:
2000 mg/day Depakote (anticonvulsant)
1800 mg/day Neurontin (anticonvulsant)
25 mcg/hour skin patch Duragesic (opiate)
160 mg/day Oxycontin (opiate)
40 mg/day Celexa (SSRI antidepressant)

All of this keeps the pain to a constant 4 on the 1-10 scale.

He has had 5 CT scans, 2 MRI scans, all showing no abnormalities except a sinusitis.  He had surgery for the sinusitis in October 1999.  This improved nothing.  

He had a diagnostic spinal tap.  Fluid was collected and showed nothing.  There was low opening pressure, though, so an epidural tear was suspected.  A Cerbrospinal Leak study was done.  Nothing.  But the neurologists suggestested a blood patch anyway.  So first they introduced saline solution into his spinal column.  This provided relief for 3 days, until the solution was absorbed.  They were sure of the CSF leak at this point, so they did the blood patch, introducing blood into the spinal column to patch the supposed leak.  No improvement, not even for a few hours.  

He has tried herbs, chiropractic treatment, eye examinations, acupuncture, and pain management including biofeedback and physical therapy.

At this point we are looking into a SPECT scan (www.amenclinic.com) and yet another neurology clinic.  We are also on the list for our local (1 hour away) unversity hospital's pain program.

This is ruining our marriage.

Sorry I don't have anything good to say, but maybe you can use some of this information.  Tami  ***@****
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