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 all:
Quick update...
Called my NS at 8:30 this morning after being up all night with HA. Just got a call back from the nurse practitioner at 4:30 this afternoon, although I've been in pain all day. (I called as a reminder to them 3 times today.) Of course, the Nurse Practitioner called me because she's been the one treating me when I've gone in for my 2 appointments. (The significance of this will come in to play shortly).
I told her that this was the same HA I've had since last Thursday, although I did get some temporary relief at the ER. She said Toradol is not given in a pill form but only through injection or IV....then she went on to call in 5 pills for me at the pharmacy. I told her about the fever and she asked if I had a UTI...I said I did and that I was taking AZO to relieve the spasms. She didn't know what it was. She asked if I tried the Indo - whatever drug...and I told her I did with no change. Then she asked if I had started the Proprananol. I told her that I thought it was a preventative medication for migraines and that it would take time to build in my system. As I'm already not feeling well, I didn't want to throw this drug and all the new side effects into the mix. She said okay. Then she said she spoke with the NS and they were going to see if they could get me into see the PST/IIH specialist in our area. (Yes, the one who's not accepting new patients. The one I've asked to see since day one. The one that other hospital NS have referred me to.) I started to cry. I told her that I felt like I was the bad child who made too much noise so I was being sent away. That because the medication hasn't seemed to fully get this under control yet and because I call them when I'm in pain...well...its just too much trouble. Of course, she says that's not the case, but rather, that my HA's are complex and they have to figure out what is going on. As if I never had PST to start with.
I've only been in my NS office twice since my DX a month and a half ago. Does this not seem ridiculous to any of you? Have I lost my mind? I'm seriously considering stopping all medication right now. This whole thing has just been a nightmare. And, now, I have to start all over again. I know...I've got the "woe is me" attitude. But, I feel so lost right now.
- MM3
Quick update...
Called my NS at 8:30 this morning after being up all night with HA. Just got a call back from the nurse practitioner at 4:30 this afternoon, although I've been in pain all day. (I called as a reminder to them 3 times today.) Of course, the Nurse Practitioner called me because she's been the one treating me when I've gone in for my 2 appointments. (The significance of this will come in to play shortly).
I told her that this was the same HA I've had since last Thursday, although I did get some temporary relief at the ER. She said Toradol is not given in a pill form but only through injection or IV....then she went on to call in 5 pills for me at the pharmacy. I told her about the fever and she asked if I had a UTI...I said I did and that I was taking AZO to relieve the spasms. She didn't know what it was. She asked if I tried the Indo - whatever drug...and I told her I did with no change. Then she asked if I had started the Proprananol. I told her that I thought it was a preventative medication for migraines and that it would take time to build in my system. As I'm already not feeling well, I didn't want to throw this drug and all the new side effects into the mix. She said okay. Then she said she spoke with the NS and they were going to see if they could get me into see the PST/IIH specialist in our area. (Yes, the one who's not accepting new patients. The one I've asked to see since day one. The one that other hospital NS have referred me to.) I started to cry. I told her that I felt like I was the bad child who made too much noise so I was being sent away. That because the medication hasn't seemed to fully get this under control yet and because I call them when I'm in pain...well...its just too much trouble. Of course, she says that's not the case, but rather, that my HA's are complex and they have to figure out what is going on. As if I never had PST to start with.
I've only been in my NS office twice since my DX a month and a half ago. Does this not seem ridiculous to any of you? Have I lost my mind? I'm seriously considering stopping all medication right now. This whole thing has just been a nightmare. And, now, I have to start all over again. I know...I've got the "woe is me" attitude. But, I feel so lost right now.
- MM3
I'm so sorry about your doc experience. Please do not throw in the towel on all the drugs, but if you are on a drug that does not lower the pressure and is making you sick, I don't think you are crazy to contemplate getting off of them. For the first few months of my dx I wanted to curl up and frankly die. I couldn't believe how sick and debilitated I was feeling and started to feel hopeless. I talked with a shrink who told me that Diamox also can be a depressant and does not help the feeling of helplessness, but I am so scared of taking additional drugs I refused any mood stabilizers and eventually I started to improve and felt like I have some control of my life again. My doc's take 6 - 8 weeks to get an appointment, but it has been through boards like these that I have gotten the best information to know that I am sane with an insane problem.
But reading about your experiences has got me all honked off. And I'm wondering what happened to the pissed off Monkey Mom that demands the best of care? Never feel whiney for wanting treatment, and don't feel guilty when your doctor doesn't have the skills necessary to treat you. I get so angry when one of my PTC buddies out there has to seek care in an ER because of neglect... which is exactly how I view it. When my pain begins to creep up (note: begins.. like can I live like this for more than two weeks?), I make a phone call. I get instructions, a new med mix, and within two weeks I'm a respectable person again. At my recent appointment, I told him of my new symptoms, which concerned him, and I have new instructions and must see retina doc asap. Everyone should have this experience! A respectful relationship with a knowledgable physician.
Demand this! Fashion make-shift weapons out of cotton balls and tongue depressors if need be. There is a time to be scared, but all hope is not lost yet.
You Rock!! Where do I enlist for your army.
I have gotten an extra pair of steel toe boots and am shinging them right now! I am in serious kick a*** mode.
This disease is so overwhelming and soooo frustrating since it is hard to find a NS or neruo. who even knows what PTC is and what they are doing.
I know it made you feel bad, but I am so freakin glad they are going to get you in to see the specialist.
First, your NP doesn't sound like he/she even knows what they are doing...neither does your Neuro which makes you feel like it is your fault...WHICH IT IS NOT! Please believe me, after working in hospitals I have seen Dr's that amaze me that they are practicing (practice is the key) medicine. I think as a society we look up so much to Dr's and there are great ones, good ones, bad ones, and really bad ones, just like any field. If they can't handle your questions than they shouldn't be in the medicine field (or as my husband says, if you call your Dr. and they don't have the time to call you back and answer your question, time to get a new Dr).
It is ridiculous that you had to call so many times and that the receptionist even had the nerve to be rude to you..I would have def. reported her to your Dr. or the office manager. Your Dr's office is supposed to be a place of caring for people!
You haven't lost your mind at all, I think that it is hard to feel a loss of control when our bodies are supposed to be a safe place and we have Dr's trying to figure out what to do, and we feel like guinie (sp?) pigs.
Sorry I wrote so much...Ok, so I am putting in another order for more steel tip toed shoes because I think there is a whole office staff I need to see and make my impression.
Jazzy
BTW...I was thinking about what my husband said about how since my DX I am sick all the time and not getting better. That prior to the DX at least if I had a migraine I could take meds and then have several good days. But, neither of those statements are true.
Prior to the DX I had pressure everyday, and anything that I would do from going to work to straightening up the house would start a HA. Since my DX, I have had several good days. But, just as before, if I start to do much of anything a HA begins. So, ultimately things haven't changed so much. Does this sound like what you guys are dealing with also?
Thanks for reminding me of my strength. You guys are great.
- MM3