Constant headache as a result of a demyelinating brain lesion

[sdgordon]

Two years ago, my husband had a brain biopsy that showed that he had a very extensive lesion.(frontal left lobe mostly) It was demyelenated brain tissue. It was believed to be the result of an upper respiratory viral infection. Acute Disseminated Encephalomyelitis was mentioned. MS has been ruled out. A follow up MRI showed that the edema was down and the lesion is gone. For the 2 years that have followed, he has had a never ending headache of vary degrees. Our neuologist has had him on so many different drugs in hopes of controlling the pain.As directed,my husband has not taked any pain relievers. Many antidepressants, anti seizure,beta blockers, you name it we have tried everything and every combination of things. The only thing that brings the pain level down is Vicodin or Ultram. When the pain gets so intense, the doctor has let him take Ultram for a short period. My husband has been though enough and deserves to live a pain free life. What could cause this chronic pain?

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

Sorry to hear about your husband's problems. As you know, the presentation of ADEM typically starts with headaches.  But the 2 years of headache after the onset of this disease your husband is experiencing now seems to be what's termed a chronic daily headache that stems from a smorgasbord of too many medications.  VIcodin and Ultram are both medications that have strong addictive properties and should be very carefully used, especially in someone who has chronic pain. Your husband should consider seeing a headache/pain specialist who can help him for this specific problem. Here at the Cleveland Clinic, the first thing our headache docs would do is stop ALL of the meds he's using for the pain.  Their feeling is that until he does, the pain will continue and nothing more can be done. Then, they will start anew with a number of promising techniques for pain relief they do in the pain clinics such as IV depakote, magnesium, immuneglobulin, or steroid infusions in the office.  IV DHE is used in the hospital. Talk to your husband and see if he's willing to taper his medications off and get a second opinion. If you're in the area, Drs. Stillman, ROsen, Gretter, and Mays are our headache/pain neurologists at the clinic and would be happy to take a look at your husband.
Best of luck.

[Ris]

My daughter had a severe case of ADEM-Spent 2 1/2 weeks in a coma, had a procedure called (spelling wrong)plasma Fraresis-where the doctors filtered her plasma from her blood and that brought her out of her coma.  I was responding to the email from "Gordon" regarding her husband's headaches.  My daughter's
ADEM was determined by MRI- MS was also ruled out but she spent, after waking up, 4 weeks on the Medical floor totally paralyzed and 3 weeks in rehab.  She too has headaches but has been advised to take IBprofen. It works for her.

[Serger]

Sorry about the pain - sometimes you feel you will take any amount of anything just for a moments peace. Please reduce the vicodin.  I took it for 2 years, including extra strength and other things, then had total hip replacement at 52.  Apparently I had become addicted to the Vicodin, even though it didn't help much.  After surgery I was out of this world on morphine for 9 days because of the addiction.  The vicodin had messed up my pain threshold.  Most people get to leave hospital after 5 days and go to rehab with this surgery - I was there for total of 17 days.  Why did they rule out MS too?  The constant pain with this can be horrendous too.  Good luck.

[mommab1]

A related discussion, headaches from acute demyelination was started.

[Barbara1942]

A related discussion, Brain Lesions was started.