Pseudotumor Cerebri Support Group

Pseudotumor cerebri (PTC) is a neurological disorder that is characterized by increased intracranial pressure, in the absence of a tumor or other diseases affecting the brain or its lining. Diagnosis requires brain scans and lumbar puncture. Characteristic symptoms are headache, transient visual obscurations or transient visual loss in one or both eyes usually lasting...

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VodkaBubble 02/27/2009

It's only very early days yet, but I have a very close friend aged almost 27. She is more like a younger sister to me and she is going to the Neurologist tomorrow for a probable diagnosis of BIH.

As with anything unknown, I am terrified by the prospect of this condition for her. I have no idea what to expect. I know, as with any condition, the way each individual is effected is different, but if anyone can give me any ideas as to what is round the corner, I'd be most grateful. She lives 3-4 hours away from me and I don't think she has a great support network while she's going through this so I'm keen to support her the best way I can.

deleted_user 02/27/2009

Hi there. I personally know that the wait for a diagnosis is one of the hardest parts of a disease. I might suggest that you wait until she has an actual diagnosis and then support her in the ways she needs support (some need information, some need a shoulder, some need space and time to digest things alone). I think the most helpful thing anyone has done for me is let me know that they are there for me, however and whenever I need them. You sound to be a good friend, I am sure your support will be essential to your friend. Good luck to both of you. (ps- I have found a lot of support from this site, that might be another suggestion for her- to reach out to those who have been there)

VodkaBubble 02/28/2009

Thanks for your reply. She's at the clinic now so we will soon know. She's there on her own too...which is what I mean by the lack of support. Doesn't help that I am out of the country too and that I was only told about this last night, else I would have been there with her...

deleted_user 02/28/2009

Love the nickname, I think I need a tequila bubble. I can tell you right now that no matter what the diagnosis is you are a great friend!!!!!!

Check out IHRFoundation.org. They are a good first source for general info. Learn what ever you can about it. And be supportive. It gets to us all in different ways and can get ugly at times even though we look perfectly normal. That is the hard part. We look healthy so we must be.......Wrong!

Again you are an awesome friend!

TJ

VodkaBubble 02/28/2009

Thanks!! I'm telling you now, this is weird...I'm normally the 'ill' one!! Will take a look at that site while I'm waiting for her to text me with what the doc has said.

VodkaBubble 02/28/2009

She has been told that she needs to go and have a scan and then they can tell her more. She had a bit of a car accident a few weeks ago which caused her to have whiplash and she said the doctor said that may have affected her along with stress. However she had the symptoms long before this accident so I'm not really sure. We'll see. I think she's playing down what has been said to her but I'll have a proper chat once I get back home.

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