PLZ PLZ SOMEBODY HELP ME

I have papilledema & intracranial hypertention i have added you to my msn which is XX if you want to spk to me

:arrow: XXX Moderated. Please use this site to converse.

my son suffers with bih, and i dont understand how he feels, doctors are not very forth coming with info maybe we could help each other, you could help me understand my son, and i might be someone to just off load onto. if interested my email can be forwarded to u, :arrow: Moderated. Please converse on the site.

Hi luvie

BIH is a pretty scary condition but it is workable, i have to say i was extremly lucky with a very good consultant at Addenbrookes hospital who explained mostly everything. Don't be afraid to ask what you want to know, make them explain it to you. xx :wink:

Hi I have BIH and i'm going through a hard time to, noone really understands so if you need to talk maybe we could help eachother x

I think consultants should recommend patients to use these forums as i found it so isolating when i was diagnosed in 2003. its like any condition you live with it not ideal but thats life. I now have a shunt which has blocked twice - i hate the dreaded hair shave but they can do it so minimal if you just ask - or perform like me!!!let us all know how you are doing and we can all support each of you, just wish i had stumbled on this when i was going through my scared and unsure patch. good luck all xx

Being diagnosed with IIH is definately isolating. I was diagnosed 2 1/2 years ago. I remember doctor's simply telling me \"we just don't know\" Then came the guniea pig phase. I felt like I was their lab rat! But I did A LOT of internet research. I wanted to find out for myself. It is a rare condition, and there has not been much research on it. So it's great that we can all come to forum's like this one, and know that our symptoms are \"normal\" for IIH.

Just a little bit about my story...My sister had IIH 2 years before I was diagnosed. Coincidentally, we both were diagnosed at the age of 23. Research says it's not genetic, but I really don't think much genetic testing has been done. (Who's going to fund that?) So, I was put on Diamox, and as the months passed, they \"tried\" many other medications for the headaches. Most of which the side effects outweighed the benefits. I have experienced many symptoms: tinnitus, the visual \"black spots\", pain behind my eyes, headaches, sharp pains in head, the usual IIH symptoms. One unusual symptom I have experienced in the last year, is a sensation of my entire body vibrating about an hour after I fall asleep. Very scary feeling. Feel awake but can't move. I thought I was having seizures, but the neurologist ran many tests, and diagnoses it as sleep paralyisis.

The good news is....it does get better. My sister is symptom free. She is no longer on ANY medications, and does not suffer at all. For most, it does pass. If you are newly diagnosed...I reccommend researching the internet. It will ease your mind, and you will get at least some answers. So, I wish you well...and hang in there!!!!