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...
We may have talked about this before but as I have the CRS syndrome...I don't recall. So, here's my problem...
My symptoms aren't too bad as long as I don't do anything. If I lay around all the time, for the most part, you wouldn't even know I had IIH. However, the moment I start to do anything...from more physical activities like cleaning or shopping, to the less physical like standing for long periods or sitting upright in a chair for longer than 15 minutes...I'm in pain. Typically this pain is in my lower back, but of course I have HA's too. I'm surprised that this occurs even with Diamox, but it does.
Does anyone else have these problems???
Currently this keeps me from doing many things OR I have to take narcotics daily to cope. I can barely eat dinner at the kitchen table with my family, because any length of time in the chair causes back pain. I certainly can't entertain the thought of going back to work anytime soon, and therefore, am looking into disability until this all gets sorted out. As my quality of life is greatly impaired I am now considering shunt surgery. Do any of you have these issues? How do you work?
Just taking inventory as I'm trying to weigh my options. Thank you in advance for your input.
MM3
My symptoms aren't too bad as long as I don't do anything. If I lay around all the time, for the most part, you wouldn't even know I had IIH. However, the moment I start to do anything...from more physical activities like cleaning or shopping, to the less physical like standing for long periods or sitting upright in a chair for longer than 15 minutes...I'm in pain. Typically this pain is in my lower back, but of course I have HA's too. I'm surprised that this occurs even with Diamox, but it does.
Does anyone else have these problems???
Currently this keeps me from doing many things OR I have to take narcotics daily to cope. I can barely eat dinner at the kitchen table with my family, because any length of time in the chair causes back pain. I certainly can't entertain the thought of going back to work anytime soon, and therefore, am looking into disability until this all gets sorted out. As my quality of life is greatly impaired I am now considering shunt surgery. Do any of you have these issues? How do you work?
Just taking inventory as I'm trying to weigh my options. Thank you in advance for your input.
MM3
Speaking from observing my daughter, she had to quit university because of pain, and because she couldn'r read or study. She had a part time job, which she tried to go back to when she got out of the hospital, but couldn't. Now her days consist of staying in bed until 3 PM - getting a snack (if she doesn't feel nausauted), having dinner at 6 (if she doesn't feel nausauted), and then by 7pm she's back in bed for the night. She had to give up hobby of scrapbooking (for now!!) because her eyes can't focus that long without very intense pain. It's a terrible thing.
But she will be getting a VP shunt this month - pre-op on Oct 7. Her NS would like to take her off Lasix and Diamox (she takes 3000 mg a day) right away. Hopefully everything will work, but then she still needs to go through the withdrawal from morphine at some point.
It's still a long journey. But as WInston Churhill said..."If you're in hell, just keep on going."
MM3, I don't know if your NS recommends a shunt, but we didn't really see any other options. I came to this group to see if VP shunts were generally successful, and it seems to give some relief, maybe permanant.
I think you have to hang on to the thought
that you will find a solution, and keep looking - never give up - make that your main focus...god I know it's tough. I try to be optomistic with Caiti all the time, and I can see the despair in her eyes.
But I refuse to let negative thoughts win. We will all win - we can share virtual positive thoughts and beat this....we have to believe this! We have to keep fighting!
Judie
That's the spirit Judie!!!!
MM3
Sorry to hear that you are not doing so well. What's CRS Syndrome? Out of the 24 years that I've had IIH, I've had to stop working for about 7 or so months. Have had other periods (maybe 3 times) when I was out for maybe a week, but that was usually because I was in a lot of pain, then had an LP. If I had the pain and vertigo type symptoms that I am experiencing today, every day, I would not be able to work I'm sure. Never seriously considered a shunt, but I know that it has obviously worked well for many. Good luck on your decision.
T.
Deb
Deb:
I'm saddened to hear that your shunt hasn't helped much with your back pain. I don't know what your other issues are with your back, but, either way it certainly brings to mind a topic for discussion with my NO. I'm glad that your HA's are less frequent. Thank you so much for your input.
And, last, to Judie...something I didn't say before....I'm so sorry that Caiti is so ill, but am so happy to know that she has your constant, positive support. This illness can make anyone feel despair...I'm glad your here to help us see the light.
Thank you.
MM3