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...
Well, kids...I was back in the ER this weekend. Started off with pain in my left jaw to the point where I couldn't eat on Thursday and Friday of last week. Thursday I took the girls to see Zach Effron in "17 Again" at the dollar cinema. (GREAT MOVIE!!!) Then Friday, we went to the spray park and the drive ins. (I love the drive-ins.) We didn't get home until late and Saturday morning I awoke with horrible head pain. By noon I took a Dilaudid with no relief. At 2 p.m. I told my hubby I had to go to the ER. Instead I tried to shower and wait it out. At 5 p.m. I took another pain pill and still no relief. At 7:30 I called my after hours doc and they insisted I go to the ER.
Upon arrival to the ER, initially, I was placed in the waiting room where I sobbed for some time in pain. I finally called my doctor back at which point they called the ER back and insisted that I be treated immediately. I was taken back to a room and given IV Phenergan and Dilaudid, and then the fun began. Over a period of 12 hours a Lumbar Puncture was attempted on me 8 times. Time and again the doctors would inject my spine with numbing medication and time and again they would attempt to put the needle in...and time and again, they would go "off-sides" and I would be in incredible pain. Finally, they got it and my opening pressure was 33. They removed 32 cc's of fluid, so now I am suffering from an awful low pressure headache and with some 20 holes in my back, quite a bit of back pain too. I also awoke with blood in my nose. So, all in all not doing so well.
Saw my specialist today. She still insists that I keep taking the 50 mgs. of Topamax and that the next time I have to be seen, I try to go during the week when she can do a LP herself. (I said, I'll try to plan better next time, don't know what I was thinking!)
And so you have it. I'm still in the Twilight Zone. AUUUUGGGHHHH!!!
Upon arrival to the ER, initially, I was placed in the waiting room where I sobbed for some time in pain. I finally called my doctor back at which point they called the ER back and insisted that I be treated immediately. I was taken back to a room and given IV Phenergan and Dilaudid, and then the fun began. Over a period of 12 hours a Lumbar Puncture was attempted on me 8 times. Time and again the doctors would inject my spine with numbing medication and time and again they would attempt to put the needle in...and time and again, they would go "off-sides" and I would be in incredible pain. Finally, they got it and my opening pressure was 33. They removed 32 cc's of fluid, so now I am suffering from an awful low pressure headache and with some 20 holes in my back, quite a bit of back pain too. I also awoke with blood in my nose. So, all in all not doing so well.
Saw my specialist today. She still insists that I keep taking the 50 mgs. of Topamax and that the next time I have to be seen, I try to go during the week when she can do a LP herself. (I said, I'll try to plan better next time, don't know what I was thinking!)
And so you have it. I'm still in the Twilight Zone. AUUUUGGGHHHH!!!
Ironically last time I went to the ER (with my low-pressure-type headache), there was another PTC patient there with a high pressure headache - they kept me waiting for nearly 45 minutes & she'd been there for awhile before me and waited even longer. It was a nightmare for both of us!
Anyway, I hope the low pressure HA passes and you get to feeling better quickly!
It's so sad - seems like each time one of us tries to do something special like go to the splash park or drive in - we end up paying for it. Just really sucks (pardon my language).
I hope once your low pressure headache resolves you feel better.
Angie
and the waiting in the ER room is just as bad, I'm glad your Dr. called to get you in...still waiting is the worst when you are in so much pain. One time I begged my husband to let my lie on the floor because I felt so sick, but he told me the floor is so germy so he put a bunch of seats in a row and kept going up and asking the triage nurse when I would be seen.
Your pressure was high and boy they sure took a lot off, no wonder you have a low pressure headache, lay flat and drink lots of fluids. No wonder your back hurts with all those tries! You have been through too much and I am demanding the universe that all this nonsense stops and to get you better without more pain.
I hope that your low pressure headache gets better soon and start to feel better. Keep us posted, when you are up to it, about how you are doing. I'm sending you some teddy bears to help heal your sore back, Blessings, Jazzy
Friends don't let friends get LP's in the ER!
But,You've got to do what you've got to do and hopefully it will get you some relief until the pressure returns. I'm curious about how your neuro wants to do another LP in the same week! Will your pressure have time to get back up, and your poor back! Too many punctures is not good.
Well, take care of yourself!
Bax
No silly...your pain is getting the worst of you. I'm not going back in for an LP this week. My neuro just said next time I have an attack try to hold out for a weekday when she is in the office so she can do the LP as opposed to going into the ER where the incompetents are! Believe me....I won't be having an LP anytime soon! : )
GBF
Maybe request it done under fluoroscopy next time? My last LP, while still sucky, was at least gotten in only a few pokes instead of the pin cushion I was in the ER.
Lay flat for longer than you think. Like a week. I'm not kidding. It sucks, I know.
Hugs and blessings and we are here for you!
Oh, and to answer the question about the fluoroscopy LP...I guess radiology doesn't do those on the weekends. (WHAT??? I know...ridiculous...but, that's what I was told. And, I was also told that anesthesiology wouldn't do it because they don't know how to read openig pressures. I know...I know.)
Anyway...thanks for the love. I'll keep you updated.
MM3
You are in my thoughts and I pray for a painless, quick recovery. GB, Jazzy