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...
Have any of you developed LOW pressure headaches from resolved PTC and continued diamox? I have been having headaches in the back of my head that feel better when laying down, neck pain, dizziness, etc. and my most recent eye exam showed my papilledema gone. My optho said to contact my neuro to find out if perhaps now my pressure is too low. Sigh...I don't want to be a science experiment. :(
Congrats on your Remission! I am sorry to hear you are still having some residual affects though.
I don't know if this helps, but I got low pressure headaches after every spinal tap when fluid was drained.
I remained on Diamox or Lasix while in remission for years.
Also, low pressure weather systems always gave me killer headaches.
Regarding calling your neuro to see if your pressure is too low, did your optho tell you what this might accomplish? Spinal Fluid has to replenish itself right? I don't think there is a procedure to add spinal fluid back into the body.
How long have you been in remission and when was your last Tap?
Your body might be going through an adjustment period...probably a good idea to call your neuro so your symptoms are documented, but beyond that, I can't think of how your neuro could tell if your pressure was too low and how s/he could it?
Oh, I forgot, your neuro could check if you have low pressure with an ultrasound if he has the right machine with the small wand-it is non invasive and painless, but resolving the issue I think is just a matter of time and waiting for your body to replenish CSF.
Anyone out there Correct me if I am wrong...
I have not had an LP since Oct 12 when I was diagnosed.
I received an email back from my neuro saying to stop the diamox immediately and keep a journal of how I feel for a week then check back in with him.
I didn't know if they could check low pressure by doing a tap and seeing the number or lack thereof.
I am going in for a LP tomorrow and was reading up on what to expect. One of the reason they gave for low pressure headaches can be from a leaking spinal fluid in the body. From what i read, after the LP there can be spinal fluid leaks that leads to headaches. One way to tell if there is spinal fuild leaks is when the headache feels better when lying down on bed and worse when in upright position. The article also stated that Spinal fluid leaks can result from several factors and not just after LP.
Since you stated headache felt better when laying down that reminded me of what I read today about what to expect after my LP.
Btw congrats on the good news towards remission and improvement on your overall health. hearing about good news like yours give me great hope :)
David
Yep, your neuro could check to see if your spinal pressure is low with a tap, but also with ultrasound. Maybe ask if this can be done first to avoid an invasive procedure?Lucky, you are being treated at Hopkins, one of the best places to be...
Keep us posted on what your neuro recommends!
BigBear- what you described, the leakage of spinal fluid is exactly what used to happen to me after every tap. It would take 7-10 days for my body to naturally form a "scab" over the puncture wound. Occasionally I would get a blood patch which would help for a day or two, but ultimately, I just had to let my body heal itself.
Good luck with your LP today - Let us know how it went. :)
Good luck,
Mary