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...
So it would seem that Spring has finally arrived in Rochester, NY....and with the arrival of Spring comes the drastic fluctuations in temperature and thunderstorms.
There was a time when I found all of this to be exciting and fun...not since I got IH. I thought this would get a little better once I got the VP shunt...but, today it became clear to me that this isn't the case.
At the onset of today's storms, I, at first, felt nauseous. But, as the storm got closer, the more my head felt like it was in a vice. The pain I had was not in my head, but, in my lower abdomen where the end of my catheter was located....I accepted the pain as a positive sign that my shunt was draining as it should. Apparently, however, the shunt wasn't able to keep up with the production of CSF....because, the closer the storm got the worse the pressure in my head became. I had no head pain at all...but, I could feel the pressure from the top of my head all the way down my neck. SO MUCH PRESSURE...It was really strange. I actually started to panic because I was afraid if the pressure got any worse that my head might actually burst!!!! Once the storm passed I felt some relief..,,and even though we had additional storms, the pressure never got that bad again...until now. It's late and we haven't had a storm since earlier this evening...but, now it's happening again. Wonder if a new storm or temperature fluctuation is on the horizon. I just want to puke...Uggghhh!
There was a time when I found all of this to be exciting and fun...not since I got IH. I thought this would get a little better once I got the VP shunt...but, today it became clear to me that this isn't the case.
At the onset of today's storms, I, at first, felt nauseous. But, as the storm got closer, the more my head felt like it was in a vice. The pain I had was not in my head, but, in my lower abdomen where the end of my catheter was located....I accepted the pain as a positive sign that my shunt was draining as it should. Apparently, however, the shunt wasn't able to keep up with the production of CSF....because, the closer the storm got the worse the pressure in my head became. I had no head pain at all...but, I could feel the pressure from the top of my head all the way down my neck. SO MUCH PRESSURE...It was really strange. I actually started to panic because I was afraid if the pressure got any worse that my head might actually burst!!!! Once the storm passed I felt some relief..,,and even though we had additional storms, the pressure never got that bad again...until now. It's late and we haven't had a storm since earlier this evening...but, now it's happening again. Wonder if a new storm or temperature fluctuation is on the horizon. I just want to puke...Uggghhh!
But, what I did at the time, out of desperation! even tho I was off diamox, I had some left over, took one and it did help. Also, I take Imogrin for migraine and have taken them as well for these weather related hds. Its not a cure but does make life a bit more bearable.
Why not have a chat with your dr about getting some of the migraine meds? The ones were you only take them when a hd is coming on?
Not a long term drug.
I also have a vial of Stemetil, in my hand bag. Goes everywhere with me. just in case. I find if I take them, right at the start of the nausea, it keeps it at bay, well some of the time! Feel better! Cath.
Mandy
Sorry :(
Feel better!!
They say I can't take any of the migraine (triptan) meds because prior to the IH diagnosis...I had a diagnosis of Hemiplegic Migraine...a complicated type migraine mimicking a stroke. With this particular type triptan meds are contraindicated as it puts patients at risk for stroke...and, I'm allergic to the meds they due prescribe like Verapamil. Of course, I'm convinced I've had migraine pain from the IH all along...but, there you have it.
What I do think I might try next time is an over the counter water pill like Diurex. Prior to my diagnosis, when I felt intense head pressure and my face and hands would swell...I would take these pills and they helped. And...because I don't feel head pain but, rather just the increased pressure, maybe this will make all the difference. I'll keep you posted as to whether or not it helps.