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...
Just dropping in to give a quick update and tell each of you that I have been thinking of you all. So many of you had recently had shunt surgeries, (Jazzy, TJ, KS) and others have just been struggling with the disease. So, I know, it was a fine time for me to drop out of sight and I apologize. I have been praying for you all.
So...to update...After graduation my 13 year old nephew was staying with us to visit his cousins for the week. My doctor had placed me on an antibiotic called Macrobid which made me quite sick. I had horrible daily headaches and nausea which I thought were from the PTC, but it was just this nasty antibiotic. As most of you know I have been battling an ongoing UTI for almost 3 months so we were hoping this medication would be the cure. If it isn't, than the LP I had done several months back has done some permanent damage and I may have to deal with UTI's for a long time.
At the same time I ran out of my Topamax sample meds and had the doc call in a prescription over the holiday weekend. I was without the medication for a couple of days, but when I finally got it I found that they gave me the generic version. I took it at bedtime as usual...AND WAS UP ALL NIGHT LONG WITH INTENSE ANXIETY. Don't ever let the pharmacy tell you that generic Topamax is the same as brand Topamax....IT'S NOT. The patient education form for brand Topamax states that it causes drowsiness. The generic form states that it causes sleeplessness and anxiety. Hello???? By the time my doctor, pharmacy and insurance got this all sorted out I had gone almost 7 days without medication, so today I'm feeling high pressure and pain in my jaw...swollen lymph nodes. Of course, in the midst of all of this our computer shut down...(which is why I've been offline.)
That all being said, I've managed and pushed on. I felt bad that I was sick while my nephew was here so I took the kids to the Rochester Science Center, had my son take them bowling, we went to laser tag, out for pizza, to a spray park and beach, and of course, a fourth of July picnic and fireworks. I felt crappy and I had little patience so I wasn't my usual self, but, I think the kids had fun and that's all that mattered to me.
Please know though that through it all you have been in my constant thoughts. I hope to get caught up on all the posts and respond soon.
Love you all.
MM3
So...to update...After graduation my 13 year old nephew was staying with us to visit his cousins for the week. My doctor had placed me on an antibiotic called Macrobid which made me quite sick. I had horrible daily headaches and nausea which I thought were from the PTC, but it was just this nasty antibiotic. As most of you know I have been battling an ongoing UTI for almost 3 months so we were hoping this medication would be the cure. If it isn't, than the LP I had done several months back has done some permanent damage and I may have to deal with UTI's for a long time.
At the same time I ran out of my Topamax sample meds and had the doc call in a prescription over the holiday weekend. I was without the medication for a couple of days, but when I finally got it I found that they gave me the generic version. I took it at bedtime as usual...AND WAS UP ALL NIGHT LONG WITH INTENSE ANXIETY. Don't ever let the pharmacy tell you that generic Topamax is the same as brand Topamax....IT'S NOT. The patient education form for brand Topamax states that it causes drowsiness. The generic form states that it causes sleeplessness and anxiety. Hello???? By the time my doctor, pharmacy and insurance got this all sorted out I had gone almost 7 days without medication, so today I'm feeling high pressure and pain in my jaw...swollen lymph nodes. Of course, in the midst of all of this our computer shut down...(which is why I've been offline.)
That all being said, I've managed and pushed on. I felt bad that I was sick while my nephew was here so I took the kids to the Rochester Science Center, had my son take them bowling, we went to laser tag, out for pizza, to a spray park and beach, and of course, a fourth of July picnic and fireworks. I felt crappy and I had little patience so I wasn't my usual self, but, I think the kids had fun and that's all that mattered to me.
Please know though that through it all you have been in my constant thoughts. I hope to get caught up on all the posts and respond soon.
Love you all.
MM3
Interesting about Topomax generic - I'll make a mental note of that.
You have been missed!
Angie
I hate UTI's and I hope they find something that works for you, at one point I took cranberry supplements on top of the antibiotics, which seemed to help. I hope you get some relief soon and they are making sure your kidneys are okay, no kidney infection.
Wow you really did great with your nephew, I wouldn't have been able to do that, thank you for thinking of me with all that is going on with you.
I pray that they can get you to feel better and you got the right topamax so you are in less pain, we all misse you! Blessings, Jazzy
Be sure to eat plenty of yogurt and occasionally take a bath instead of a shower to keep the yeasties from running amok. That's the last thing you need!
Take care!
Bax