My brother (37 yrs old) two years a go had a severe headache and found out that he had blood clots. He received treatment for the blood clots and the headaches went away or became manageable. Fastforward two years to last week. He started to get a headache but this time it was much worse. By the end of the weekend he was in so much pain he went to the ER with sign of a fever, throwing up, and severe head pain. They ran multiple tests i.e. Cat Scan, MRI and found nothing. They decided to do a Spinal Tap to make sure he didn't have meningitis. The fluid was clear and had no signs of infection, but they did find that the pressure was at 3 times the normal level, which probably was why he was having this massive headache. In addition, his neurologist did find multiple blood clots but felt that was not the contributing issue for his high spinal fluid level or his headaches. What is worrisome for me and his family is the treatment that is being given to help combat the headaches and spinal pressure, which does not seem to be reacting to any types of medication. Could a male patient present signs and symptoms of pseudotumor cerebri? What else could this condition be that he has? He has been in a hospital for 9 days with no relief from the headaches or the spinal fluid pressure. My family and I are at our wits end and I think the Dr. is too. Any thoughts.
Hi. Im sorry to hear your brother is in so much pain.
Have the drs diagnosed him with PTC yet?
It does sound like he does have it. In the absence of any findings from the cat scan, MRI and lumber puncture, but with increased csf and an opening pressure higher than 20, you get a diagnoses of PTC.
Do you know what his opening pressure was? Thats the number they use to count the flow of csf in to the manometer from the lp.
Altho, not as common as in women, men can have PTC.
Its newer name is IIH( Idiopathic Intracranial,Hypertension) and you should use this name to look up all the facts about IIH.
Have they started any treatment so far with your brother? The usual drug is Diamox or Topamax.
Has your brother seen a Ophthalmologist yet? This is very important as he could have "papilloedema, swelling of the optic nerve, which can result in sight loss if not taken care of properly.
I have IIH and if I can help in any way, drop me a line. I have it for two years now, and have a VP shunt. Cath278
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