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...
Woke up yesterday morning with horrific head pain. I took some Dilaudid and couldn't get relief. My shunt valve and tubing felt really swollen, and within an hour or so I was in the restroom vomiting. As such, we went to the ER for treatment. As it turns out, the doctors in Rochester don't have the tools to adjust my particular shunt and therefore they wouldn't do an LP. They treated me with IV Dilaudid and Phenergan but that's all they could do. They offered to keep me overnight to give me continual pain relief, but as I had meds at home I chose to just come back to my own bed and try and get some rest. I feel a little better today, but, I'm sure that I'm suffering from high pressure. Again, indicating that my shunt isn't working exactly the way it should. Very frustrating.
MM3
MM3
this is unrelated to your current problem. Every time I see you post I feel the need to tell you of my recent experience with pain meds.
I have seen you mention body aches or achy joints a lot recently. I was having the same problem, but only while taking 10mg vicodin. As soon as I stopped taking them my joints felt much better.
I know this isn't going to help you much since you need the pain meds, but maybe it will ease your mind a little. It could be completely unrelated, but I do know pain meds cause a lot of joint pain.
I hope this helps
Betty
Early symptoms of withdrawal include:
Agitation
Anxiety
Muscle aches
Increased tearing
Insomnia
Runny nose
Sweating
Yawning
moving into
Abdominal cramping
Diarrhea
Dilated pupils
Goose bumps
Nausea
Vomiting
I learnt this after being worried i was addicted to my new pain regime i'm not thank fully but i do metabolize pain killers quickly, BUT thankfully the hospital didn't feel you were there just for pain killers and hopefully you find out exactly why you feel like you do.
Also i am not saying you are experiencing withdrawal i am just referring to what Betty posted.
Thank you both for your responses although your right in that it doesn't have much to do with my current problem. You are correct that withdraw from pain meds can cause some joint pain, and I am working with my doctor to lessen my dosage by one pill per day per week. This is a slow progression and therefore my withdraw symptoms are minimal.
The fact that I went to the ER with a high pressure HA and vomiting while I have a programmable VP shunt is a whole separate issue altogether. This is far more concerning than the aches and pains I get from my pain meds.
MM3
I understand that. I just saw you mention joint pains in several threads, and you didn't seem to know what was causing them.
Since you mentioned pain meds here... I thought to bring it up.
I recently took some pain meds that caused my joints to ache between doses. (fluish like)
I couldn't offer any advice about a programmable shunt, so I offered what I did know.
I do hope you find comfort soon.
Back to the high pressure I assume you have done you own check marking for things that are High HA related mine are the neck aches back ache and vision blurring and knowing we are all different i am not too sure what yous are ,
That being said have you contacted your PCD regarding getting a CT or is that something a emergency visit will accomplish over there i gather cath is saying your NS is far away (short term memory slightly skiwif here)
Also i have been taking Nurofen (ibprophen) for my headaches and it helps but not as much as one would hope it also helps my neck pain temporeraly,
Again i am sorry you are going through this again and i hope you get it sorted soon
Wondering out loud here Can the NS open the valve right up to flush a shunt the adjust it back down theoretically if it opens till you get a low pressure head ache then closes it to a level you velt worked for you then it may work right ????
Yep...I apologize. They did do a CAT scan and said that my tubing was not kinked anywhere and my ventricles looked good. So they did do that and I was relieved to hear it. But, yes...the drive to Ohio from Rochester, NY is 7 hours so it is normally a long drive. Of course, when I am sick it seems much longer.
I spoke to my NS in Ohio yesterday and I am going to see him next week. They are going to schedule an LP to check my pressures. It almost seems as if over the period of a couple days the csf fluid gets backed up in my head...the valve and tubing swells, I get a HA and then something occurs to dislodge it....the fluid flows and then I get sharp abdominal pains. It's crazy. Hopefully they can figure it all out.
Betty and Drgnfly:
I get what you are saying about the pain meds. And Betty you are right. There is definitely a link between my achy joints and the medication. Over the last several weeks I have gone from taking up to 32 mgs. a day of Dilaudid to 20 mgs. a day. By next week I'll be taking 16 mgs. a day. And then...only when the pain is really bad.
As my mother has MS and my Aunt has rheumatoid arthritis, I do have some concerns that I have another type of immune disease going on. Like others with chronic illness, I still find that after a good day where I feel strong and maybe clean or run errands...the next day I end up in bed thoroughly exhausted with fatigue, muscle and joint pain and yes...headache. The good news is that the shunt has given me more of those good days, but they are still broken up by those days of recovery.
As always, my goal is to be off pain meds completely and I truly hope that my doc can figure out what is going on with my shunt. I thank you all for being here to help me in the process. I was hoping that the shunt would provide immediate recovery, but that isn't the case. While I have improved...I am still far from perfect. It's good to have you guys around while I am putting up the fight.
God bless.
MM3
I hope yu get to feeling better soon.
Liz
I have the most painful back and hips and should blades and that is why i felt i was addicted to the pain killers ( this was befor i found out the damage they had done to my brain) i am still struggling but more at ease mentally at taking the pain killers i couldn't imaging not having them right now, like i mentioned i have gone from mg twice a day of oxycontin to 10 mg once a day Which is a huge acheive ment i have tried less but end up needing more pain killers in the evening expecially if i clean.