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...
Hi, I've had headaches since 2007. At first I thought they were sinus infections. After about a year I saw a neurologist who told me my headaches were caused by stress. I'm married with 4 active kids, a small bookkeeping business and recently moved my aging handicapped Mom closer to me so I can help her. Sress?? LOL She put me on Amitriptyline which worked until spring 2010 when my headaches came back stronger and more frequent. I had an MRV last November which was normal. My eye exam was normal too. Since April 1st I have only had 3-4 days without a headache. Finally, my neurologist schedule me for an LP. It was done 6/10/11. My opening pressure was 20. I know that's not too high, however my headache wasn't too bad that morning. Is it safe to say the worse my headache is the higher my pressure is? I see my dr. on 7/6 to see what course of treatment she will recommend. Right now she has me on 300 mg. of Topamax which doesn't seem to do anything but make me extremely tired. She started me on this dose 2 days before the LP (I was on 200mg).
I'm finding it extremely hard to manage my days because of the headaches and extreme tiredness. My family and home have really suffered. I know I don't have it as bad as some of you and I pray for all of you each day. Thanks for listening and thanks for this group.
Wendy
P.S. on a good note I've lost 18lbs since 1/1/11!!
I'm finding it extremely hard to manage my days because of the headaches and extreme tiredness. My family and home have really suffered. I know I don't have it as bad as some of you and I pray for all of you each day. Thanks for listening and thanks for this group.
Wendy
P.S. on a good note I've lost 18lbs since 1/1/11!!
I have not found any connection between high or low pressure hds. It just hurts all the same.
My first opening pressure was 49, my last one 32 and I think I have had more pain with the lower of the two. So , go figure1
You say you have lost 18lbs, well done you! Its great feeling.Keep it up.
If you don't mind me asking, are you very over weight? If so, a reading of 20 may not mean too much as the usually use 25 as a cut off point for readings.
But, if you are very over weight, this may be good news for you. It could mean, that if you lost the weight, the recommend 10% of your body weight, maybe, just maybe, the could fix your problems? I have heard of people who were very overweight and losing wight really helped with the hds.
I feel I should warn you if your Neuro puts you Diamox. Its a pretty hard drug to take. I am back on it after a years break, and I swear, I slept 22 hours a day for the first week or two. I am getting better but there are a lot of irritating side effects. But, Of course, if it works you will gladly take it.
Ask any questions you like. between us all here, we have been there and definitely done it! Cath.
Veronica
I really don't feel "worthy" of posting because my pressure isn't as high as everyone elses. But there are days when I need a sounding board and only you guys would understand and I wanted to introduce myself so I wasn't a stranger.
Thanks for listening,
Wendy
Pain is different for every one. Example, I am allergic to local anaesthetic so I have my lps with out pain block. but! Have my upper lip waxed and I am crying like a baby!
Well done to you on the weight loss! That's brilliant. It can be so hard for us, with not really being able to exercise or feeling off food one day and make up for it the next.
Keep us updated with all your progress ok? And,please feel free to post, whether its a question or you need a should to lean on. We are, your new IIH family! Cath.