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...
The day before yesterday I went to an appointment with my primary care physician. I spoke with him about my recurring ups and downs with my IIH. I spoke of my observations about the shunt and how I feel that while it works it doesn't seem to work consistently. How when my pressures go up, my shunt seems to clog or get backed up causing pressure and headaches which last a week or more...and then finally "releasing", draining the fluid wherein my abdomen hurts where the fluid drains out. Not only will I have sharp abdominal pain from the excess drainage but I will also experience that intense jaw pain I've mentioned before. And, lastly, I discussed my emotional ups and downs, insomnia and general sadness over mourning the loss of my "old self".
He responded that it was "only a matter of time before we had this discussion"....that many people with a "chronic illness mourn that loss and find themselves riddled with anxiety and depression". His solution to this problem was to start me on a mood stabalizing medication called Lamictal. I went home, took the medication, and found that instead of making me sleep as we'd hoped, it caused some insomnia. Moreover, the next morning when I finally awoke I had the worst headache that I've had in a long time. I tried some meds to kill the pain, but nothing worked. Alas, finally we went to the dreaded ER. I was there for a little over 12 hours. Over the course of that time, I was given 5 doses of IV Dilaudid and 2 doses of Phenergan. While it would temporarily relieve the pain...that relief didn't last and the pain and pressure always returned, Ultimately, I know my pressures are waaayyyy up because I can feel it both in my head and jaw. That being said, I've no doubt an LP is needed. But, if I have another that would be 15 this last year alone...and that's too many.
I read up a little on Lamictal and found out that this med can cause fluid retention...which as we all know is bad for IIH. Problem is that just about all mood meds cause fluid retention and weight gain which is problematic for us. I was on Lamictal years ago and I recall having night sweats, wonkey periods, fluid retention and headaches then. Now I'm wondering if this drug was the original cause of my IIH. Has anyone else taken this? If so, what was your experience?
Thanks for your help.
Khrystine
He responded that it was "only a matter of time before we had this discussion"....that many people with a "chronic illness mourn that loss and find themselves riddled with anxiety and depression". His solution to this problem was to start me on a mood stabalizing medication called Lamictal. I went home, took the medication, and found that instead of making me sleep as we'd hoped, it caused some insomnia. Moreover, the next morning when I finally awoke I had the worst headache that I've had in a long time. I tried some meds to kill the pain, but nothing worked. Alas, finally we went to the dreaded ER. I was there for a little over 12 hours. Over the course of that time, I was given 5 doses of IV Dilaudid and 2 doses of Phenergan. While it would temporarily relieve the pain...that relief didn't last and the pain and pressure always returned, Ultimately, I know my pressures are waaayyyy up because I can feel it both in my head and jaw. That being said, I've no doubt an LP is needed. But, if I have another that would be 15 this last year alone...and that's too many.
I read up a little on Lamictal and found out that this med can cause fluid retention...which as we all know is bad for IIH. Problem is that just about all mood meds cause fluid retention and weight gain which is problematic for us. I was on Lamictal years ago and I recall having night sweats, wonkey periods, fluid retention and headaches then. Now I'm wondering if this drug was the original cause of my IIH. Has anyone else taken this? If so, what was your experience?
Thanks for your help.
Khrystine
It made my periods unbearable. I sweated profusely as well. I don't think it made me gain weight or retain fluid, but I know that some people have that side effect as well.
I finally gradually weaned myself off in Jan. (over a two month period). I feel so much better. I have MS and lots of the meds that I've been given for it cause depression so my dr. gave me lamictal to help with that. Now that I'm off of it, I'll never go back on.
KrYs
p.s. Hope you get the much needed relief. You are in my prayers.