seeking advice on diagnosis, treatment options

[sue]

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?

[CCF Neuro[P] MD, RPS]

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

[Liz]

Since young childhood, I have had the following habits:Thumb sucking (and “num-num” comforter stroking) until aged 11
Nail, cuticle biting (& surrounding skin ‘til bleeding).
If I bumped one elbow, I'd have to bump the other.
Counting – everything.  The cars we passed, the steps I took etc etc.
Rubbing skin – usually on face, around mouth, ears, nose.  
Smelling fingers – usually in figure of 8 pattern
Grunting  
Toe scrunching
Toe (or heel) tapping
Leg movements – figure of 8 etc
Hands/fingers – tapping fingers with thumb, each in turn
Rolling thumb around each finger in turn
Flicking each finger on thumb
Drumming fingers
All movements of hands, feet, legs etc in rhythm and symmetry
Usually accompanied by counting (3s, 4s, or 5s, or rhythm in head)
Pen fiddling – always the same action.  My thumb circles the top of the pen, and down & around the clip.  Repeatedly – writing and colour fades!
Teeth grinding – again to rhythm in sync with other movements
Muscle clenching – knees & upper thighs, again to rhythm & in sync
Finger writing – I write my thoughts with very fine movements of index finger
Tutting  
Repeated phrases in my head – apparently meaningless, and often find myself saying them out loud
A word or thought just pops into my head, perhaps obscene, perhaps violent and totally abhorrent
I used to worry about possible impending (I thought) disasters - perhaps of my own making
As a child, I'd try to catch a ball 10 times in a row (eg), if I achieved this, then such-&-such a thing wouldn’t or would happen
Picking.  Over the years anything – from nose to ear, scab to toe
I eat certain foods in particular ways, and am unable to eat it the conventional way (esp. tomatoes)
Raising eyebrows

I have not paid much attention to them until now.  My children are developing other habits.  I'm now 39 years of age.  I don't do all these things, but I have done them all at one time.  
Is this something I should be concerned about?

[Liz]

oops - sorry, message in wrong place!

[Barbara]

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

[Barbara]

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.

[tami]

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  ***@****

[sue]

Thank you for your reply to my query.  The aneurysm was, in fact, leaking blood for at least a couple of days before it was diagnosed and surgery performed.  The location was subarachnoid.  I tried Elavil a few years ago for migraine control with no results, so I am skeptical that it would help this condition.  Baclofen 3x per day helps a little (or, at least, the pain increases substantially when omitted), but higher doses do not increase its effect.  It is all that I have found that makes much of a difference.  The arterial clip my neurosurgeon used would prevent MRI--I did ask him this.  Do you know of any other tests I might request?  My pain clinic doctor is feeling very frustrated, also, at not being able to diagnose the condition.  Thanks again!

[CCF Neuro[P] MD, RPS]

Dear Liz:

Sounds like you may have a compulsive disorder.  If it doesn't bother you and those around you then don't worry about them.  However, if they interrupt your life and those around you then try medication.

Sincerely,

CCF Neuro MD

[tami]

Sue, how much Baclofen are you taking 3x per day?  Any info you have on this med would be appreciated.  Thanks, Tami

[CCF Neuro[P] MD, RPS]

hope you find your dosage.

CCF Neuro MD

[sue]

Message to Tami--the Baclofen dosage  take is 20 mg. 3 times per day  As I noted, I does not seen to have a direct pain-releiving function, but the pain is much worse if it is ommitted.  I am even more concerned, though, about your feeling that your husband's pain is ruining your marriage.  Did ou marry him only for the good times, or to be a life partner?  None of my business, I know, but I am concerned.  Perhaps some self-examination is in order.  Thanks, Sue

[chris]

To Sue:  I had a craniotomy to remove tumors and had the same type headache due to blood irritating the cite.  I sympathize with you... and I also agree with what you just said to Tami.  Why?  Because my husband didn't let my condition wreck our 27 year marriage.  In fact... it's made it stronger.  My youngest daughter told me that she would never forget the look on dad's face when he saw me after surgery.  Several months later, she asked me how you can tell if you're in love.  Was there some kind of something to look for?  I said, "Yeah... it's that look you said you'd never forget on your dad's face a while back."  Also, I take Baclofen.  It's a muscle relaxer and stops spasms.  I've been on it for the past 7 years.  Good stuff.  I agree.

To Tami:  Your husband needs you now more than ever.  Don't fail him when he needs support.  You may need him to do the same sometime down the road.  Did you ever think that part of his strength in crisis comes from you?  Sorry.  I just had to comment. - Chris

[tami]

Sue and Chris: I don't resent your comments; you are right, my husband needs me now more than ever in this time of illness.  And I do stand by him.  But the illness itself is truly wearing on us.  We have only been married 18 months and he has been ill for more than half of that time.  Sometimes things come out that we don't mean.  I think if you have dealt with chronic illness you can understand.  On his good days, we feel normal and things seem very strong between us.  On the bad days, it is as if a piece of fabric that has worn very thin is about to break.  The tension is high.  There are many peripheral issues: a new (unplanned) baby, full-time work (one of us has to), addiction (to pain meds), my own health issues (depression, ruptured lumbar disks), extremely unsupportive family members.

Sorry, I don't mean to beg for an excuse for my comment; I just wanted to give an explanation.  I will not leave my husband, nor will I demand he leave me.  The most difficult part is that many Drs keep telling us this is only temporary and that he will get better.  That hopeful state of mind is a fragile and upsetting one in the face of ongoing illness.  We are beginning to accept his condition as truly chronic and his current existence is a painful and uncomfortable one.  This is painful for me to accept. Indeed, our marriage is not what we envisioned when we took the vows--no one's is but we have to daily reinvent the "worse" in "better or worse" so that we aren't always stuck with the "worse."  But we are sticking with it.  It is just so frustrating when Dr after Dr says, "you've already done everything I can think of.  I don't know what to do for him."

Thanks for making me think...Tami

[CCF Neuro[P] MD, RPS]

thanks for your comments.

CCF Neuro MD

[sue]

To respond to the doctor's questions on my query of 1/20/00, my anuerysm was cerebral, it did leak for at least two days before being diagnosed, and it ruptured during surgery, so there was significant intercranial hemorraging.  I convinced my doctor to try the two medications you suggested, Indocin and Elavil, but I had forgotten that serotonin uptake inhibitors cause the pain to become significantly worse.  The Indocin by itself helped a little bit, but not enough to get me "up and going" again.  Keeping in mind the types of medications that make the pain worse, can you think of any other classes of drugs that might be helpful?  We are considering Valium, but don't know if it has any value in this case.  We're still stumped, unfortunately, but very much appreciate your consideration of my case.

[CCF Neuro[P] MD, RPS]

Dear Sue:

Elavil is not a serotonin uptake inhibitor.  It has some serotonin activity and this is why it is used for migraine headaches.  I would suggest a trial of neurontin as another alternative pain medication.

Sincerely,

CCF Neuro MD

[sue]

Thank you for your response. While I know that there are many others that you give advice / information to, I am still seeking relief. My freind and I have surfed the web for more info., basically anything we could find. We stumbled accross info. on trauma to the brain. Some of the possibilites are: "Displacement of intracranial structures", "Inflammation" (My right side does swell when it's at it's worse), "Ischemia", "Meningeal Irritation" (which is what we discussed), and something called
"pneumocephalus". While it had appeared like the Indocine might have helped, thus far all it has done is cost me money. The Elival actually makes it worse. I am still looking for an answer to my pain. My friend will not give up nor will she allow me to either. My pain is definately infuleneced by the weather (better during high pressure). The best I've been able to do is a 4 on a scale of 1-10 of pain. I'm hoping that if I can find relief, others may benefit too.

Thank you !

[CCF Neuro[P] MD, RPS]

Dear Sue:

I am sorry about your continued pain.  Like previously stated, it is likely due to the hemorrhage of your aneurysm.  Pain medication is an individual thing at times, where one medication will work for some, for others there is no effect.  Good luck in finding the correct medication.  As previously stated, maybe neurontin might help.

CCF Neuro MD

[sue]

Again, thank you for your comments. I obtained my med records and after reviewing them found a comment from the surgeon that performed the aneurysm repair and it stated that there was an infarct in the thalamus region. After reading some info on this subject, I found that there is a condition called "thalamic pain syndrome". In your opinion, is there a possibility that this is the cause of my pain. I have also found another possibility called RSD/CRPS, which is the malfunction of certain nerves at the site of trauma.
  Please let me know what you think. My pain is getting much worse and I really need to find an answer.
  Thank you,


  Sue

[CCF Neuro[P] MD, RPS]

Dear Sue:

I think it would be the thalamic pain syndrome.  We see it alot in people with thalamic infarcts.

CCF Neuro MD