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...
As many of you know...last weekend I had a horrible episode in the ER which led to 7 attempted LP's and a final LP removing 32 cc's of CSF. All week I have battled what my doctor believes is low pressure symptoms, including some head and eye pressure, nausea, back pain and pressure, and yes that returning jaw pain and pressure I had just before my last attack.
In response, I have been treating with 4 mgs. of Dilaudid as needed (typically only twice a day...once first thing in the morning and once before bed...I try to muddle through the day). I am also taking 50 mgs. of Topamax at bedtime. Other than that I am med free.
WHAT CONCERNS AND PERPLEXES ME IS...all day today I have had a dull chest pain right over my heart, which mildly worsens upon taking a deep breath. I looked up info on Dilaudid and Topamax and neither med causes this side effect. Also, I don't have high blood pressure or heart problems that I am aware of. So, my question is...could this be from the LP? An infection taking place? Has anyone else had this kind of response before?
Tomorrow I will be going to the hospital to have a blood patch done and will definitely mention the chest pain at that time, but, was curious to get some input if you guys had any.
Thanks.
MM3
In response, I have been treating with 4 mgs. of Dilaudid as needed (typically only twice a day...once first thing in the morning and once before bed...I try to muddle through the day). I am also taking 50 mgs. of Topamax at bedtime. Other than that I am med free.
WHAT CONCERNS AND PERPLEXES ME IS...all day today I have had a dull chest pain right over my heart, which mildly worsens upon taking a deep breath. I looked up info on Dilaudid and Topamax and neither med causes this side effect. Also, I don't have high blood pressure or heart problems that I am aware of. So, my question is...could this be from the LP? An infection taking place? Has anyone else had this kind of response before?
Tomorrow I will be going to the hospital to have a blood patch done and will definitely mention the chest pain at that time, but, was curious to get some input if you guys had any.
Thanks.
MM3
Keep us updated!
Charlotte
Second...I am very disappointed in you my fellow daily stregnth friends. Nobody told me about this blood patch business! I went in this morning to get my "relief". And, I must say that the staff was amazing, talented and compassionate. Absolutely fantastic. And, I will say that my headache was relieved almost instantly. However...I traded one pain for another. I guess they normally deposit approximately 15-20 cc's of blood into the spinal cord, but they were only able to deposit 11 cc's into mine because I WAS IN SOOOO MUCH PAIN! The pressure from the blood patch was unbearable. After the patch, I couldn't move off the table onto the recovery bed because the pain was so severe. I was in tears. I was shaking terribly. They immediately put ice packs in place and that helped a tad bit. We live 30 minutes away from the hospital but as soon as I got home I popped the Dilaudid. While they were putting the blood in, I also felt the pressure in my head greatly increase and my ear began to "whoosh" and my jaw pain was immediate. So, I am still treating the pressure and jaw pain as well.
Did anyone else have this kind of trouble with a blood patch? You guys didn't warn me. (So sad.)
MM3
So sorry to hear about your blood patch experience. After my LP I also had a spinal leak and read a lot about blood patches and opted to try to wait it out. Maybe I'm paranoid but antime I have an invasive procedure something always tends to go wrong. I was especially nervous b/c it had to be done in the ER And I would not know the doctor/credentials. I ended up laying in bed flat for almost a week before it finally healed on its own - thankfully.
Hopefully now that your leak is patched you will start to feel some better. Low pressure headaches for me were far worse than the high pressure ones I experience daily.
My headaches continue daily and I continue to work with my Neurologsit to get the right medications. Hopefully, someday we will find some combination that will work for me. I remain on the diamox 500mg daily and we just added lasix. If that doesn't work I may try Topomax. Seems that others have had good results with Topomax. I really get the feeling that my Neurologist doesn't know what to do - whatever I ask for he does. I guess its good on one hand but I wish he had some medical expertise to offer me. I do have a second opinion scheduled at a headache clinic but thats not until November. Its a journey and one I'd rather not be on.
Hope you feel better soon!
Angie
Just so you know, my statement about disappointment in you guys is bathed in sarcasm. I know...who me? Sarcastic? Never! I would however, like to know what your Blood patch experiences have been.
MM3
Then, once the patch was in, I went pretty much immediately from a low pressure headache to a high pressure one. However, the low pressure headache was the worse of the two.
I don't remember feeling agony from the patch itself. I was sore, yes, like I had a huge bruise there after someone punched me or something. Also all the needle pokes were pretty sore. But I recovered from that ok. In fact, my low back still hurts right now from the LP I had almost three weeks ago, and that's definitely longer than it hurt last time, by a long shot.