I am desperately trying to find someone or some information about having chronic daily headaches after a stroke! My sister (age 29) had a stroke a year ago, and continues to have headached EVERYDAY! She is on disability now and no medications will relieve the pain. She had a vertebral artery occlusion which caused the stroke. No brain damage from the stroke shows up on the CAT scan or the MRA/MRI. She has now been diagnosed with Protein S deficiency, which caused the clot and also the one she had 10 years ago (thrombophlebitis with a result of pulmonary embolism). The docs now suspect pseudo tumor cerebri causing the headaches. They say the sagittal and caudill sinuses could have gotten damaged from the stroke and are causing the excess pressure in the head. The optic nerve does not look right and they suspect pseudo tumor. They do not want to do a spinal tap because of the coumadin which she must remain on for life (since she has thrombophilia (Protein S deficiency). She has been on Diamox (250mg twice a day) for about 6 weeks with no relief. We were told that it could take months for the diamox to work right and to give relief. Any help or directio for us. I would really like to find information that this could be the case for her and/or if there are any cases of this pseudo tumor being a result of the stroke. And does it sound right that the Diamox could take this long to work? We have also seriously thought about bringiing her to the Cleveland Clinic.
Sorry to hear about your sister. I find it somewhat puzzling that your sister had a vertebral occulsion with no evidence on MRI/MRA. Certainly, the headaches might be a result from from pseudo tumor cerebri. This would be especially true if she had papilloedema and increased ICP. A good opthalomological exam would show if there was papilloedema. If present, then your sister could be weaned off the coumadin and started on heparin for a few days with the LP and measurement of ICP, then restarted on coumadin. Diamox may or may not work. Usually if it works, one sees the resolution of papilloedma within several weeks. If diamox doesn't work then steriods, and if that doesn't work she might need a shunt.
So, the initial thing to do is figure out if she really has optic nerve changes (papilloedema). If she still has this, the obviously the diamox is not working and she needs steriods.
if your sister needs a shunt. I would contact Dr. Mark Luciano at CCF. He helped my sister who is 37 and suffered a stroke six years ago and suffered severe headaches since then. She had got hydrocephales as a result of the stroke. Dr. Luciano put in a new type of shunt and she has been greatly relieved of headaches since her operation in October and the recovery was very fast.
Could you email me? I am very interested in hearing more details about your sister! We have not been able to find any other patients with the same problem as my sister. The doctors here are all "puzzled" as to why she still has the headaches.
My email is ***@****. Thank you very much!
Hello Kathy, I'm having severe headaches myself.I'm taking neurontin 300 mg at 3600 mg.a day for these headaches.The doctor put me on diamox cause nuerontin wasn't stopping the pain.This was like taking candy to me,so he put me back on neurontin,at least i got some relief from the pain.Hope this will help you.
Thank God! My father suffered a stroke in August and has had sharp knife like pains in his head (typically behind his eye) or the top of his head every since. The opthamologist says there's nothing there and the other docs have suggested tranquilizers, cortisone nose sprays and antihistamines. These stabbing pains come without warning and are very upsetting. The docs believe my father suffers from small vessel disease. Has anyone else had any experience with this? We are thinking of taking him for a neuro consult and are worried something else may be the cause.
I think I answered your posting under another heading. The etiology of your occulsions is unknown if I remember correctly. You just have to be really good at staying on a very low fat diet, keep taking your plavix or other platlet aggregation inhibitor. Keep your hypertension under control.
My daughter had a stroke when she was 13, she is now 17 and has had a headache every day since the stroke. We have tried many different medications, acupuncture, meditation, etc. with no real success at relieving the pain. This summer she decided to go medication free and while she feels better due to the lack of side effects, the headaches are worse. We have been working with a pain clinic in Chicago and most recently through Childrens Hospital in Milwaukee. We are looking for someone who has experience in this field and may be able to offer some insight as to our next course of action.
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