Our expert says:
My sympathy is with you – this must be a terribly frustrating and frightening time for you!
Unfortunately, your case is very complex and I will not be able to tell you what is causing your pain and symptoms. I advise that you carry on consulting a specialist doctor (neurologist) that you trust, and together carry on investigating all possible causes. Preferably, consult with a neurologist who has good experience dealing with traumatic brain injury or rare conditions. You would probably have the best success if you consult a doctor who is linked to a tertiary institution, such as a university or medical research centre. Investigate possible injury to or compression of cranial or cervical blood vessels, as this sometimes causes similar symptoms as you described. Always get a second opinion.
Unfortunately initial, routine investigations did not indicate any damage and the cause or injury that you have suffered may be undetectable by current routine medical examinations-that's why it is important that you link yourself to a doctor who has access to the latest medical developments. You and your doctor will need to investigate other, less likely causes for your problem. This may take months, or even years, but keep persevering!
For now it is important for you to find some type of alternative method (perhaps acupuncture or a highly recommended osteopath or chiropractor) to relieve your pain. Only see someone recommended by your neurologist. It is imperetive that you find a doctor that you can stick with and don’t chop and change from one therapist to another, because treatment didn’t work at first. Also, cortizone and other treatments have certain side-effects that you need to know about. Your doctor should be telling you what the possible positive and negative effects of long-term (and short-term) medication may have on you.
Antidepressants may have been prescribed to help you cope with this very painful and disabling condition you have. Chronic pain is one of the major causes of chronic and severe depression. If you don't want to take antidepressants it may be a good idea to consult with a psychiatrist/psychologist, who can help you deal with the psychological impact this condition has on your life, and perhaps keep you motivated through the various tests and treatments you may go through. Perhaps even more important, now is a time to reach out to your support group - spend time with family and friends and let them help you - this is not a time for you to be a big girl and do it all on your own. Let significant others help you.
Finally, get second opinions!! Perhaps that build-up of CSF is not so insignificant according to another neurologist/radiologist.
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