Pseudotumor Cerebrai and Birth Control Pills...PLEASE HELP!!

[AngieEMT]

I was wondering if anyone knew anything about the use of birth control pills with a diagnosis of pseudotumor cerebrai. I was diagnosed in 2001. I have been relatively symptom free for a couple years. I also have some menstrual problems which have been ongoing and worsening in the last 6-8 months. My OB/GYN would like to put me on the pill to regulate this. I did have a neurologist tell not to take BCP's because they could trigger a relapse. However, he backed this information up with an article dated 1989. I am wondering if this is still valid information. I am definetly sick of the menstrual problems, but terrified of the idea of triggering a relapse. I missed just shy of a year of work for the first bout with PTC. Thanks for any help!!

[Prissylmc]

Hi Angie,
I was diagnosed with PTC in 2005.  Luckily, my PTC is not very severe at this time.  Initially it was pretty bad, but my neurologist (who is amazing!!!) was able to get it controlled.  I have had at least 10 spinal taps.  I get the same, no cause no cure schpill.  I was on Diamox and Topomax for about 1 year and a half.  After being taken off the medication, I had one relapse and had to have another spinal tap to relieve the pressure.  The neurologist did not put be back on Diamox or Topomax.  I had Lap Band surgery last year, to help lose weight and help prevent a relapse.  Since I had my surgery, I was instructed not to take any pills larger than the size of a pencil eraser.  I told my neurologist about this and he gave me a running prescription of liquid Hydrocone.  While the hydrocone makes me itch and pretty much causes me to sleep for hours, this has been the best thing for my headaches.  As far as birth control goes, when I was initially diagnosed with PTC the neurologist immediately took me off my birth control.  I was taking Yasmin birth control at the time.  I talked to my neurologist about getting put back on the birth control and he didn't say not to take it.  He just told me to make sure that I am listening to my body and if there was any indication that the birth control was triggering it, then to stop taking it.  I have also talked to my OB/GYN and she knows about my condition and also was very clear about making sure that I listened to my body in seeing if there was a trend/link to triggering the PTC.  Instead of putting me back on Yasmin, she put me on Seasonique.  Seasonique is the birth control that only allows you to have 4 periods a year.  

I think for each person, it may be a case by case basis.  If your doctor gives you the okay to take birth control, just be sure to listen to your body and see if it might be triggering the PTC.

Hope this helps.

[BridgetteGrace]

Angie, I was diagnosed with PTC in 2005 I was pregnant at the time. Don't take the pills, I was given the birth control shot shortly after I had my baby, which at the time I was free of the PTC, only a few days had passed after the shot and I was dealing with the PTC all over again and had to wait the 3 months for the shot to wear off before I got rid of the PTC.  I don't recomend it to you since I was proof that it can cause a relapse of the PTC.  My neuro-opthamogist told me the few things that can trigger the ptc, are being overweight, high blood pressure, use of the tetracycline antibiotics, (doxycycline), high doses of vitamin a, being pregnant (that was how I found out I was pregnant in 2005 as I didn't "fit the bill" for having PTC otherwise).  Good luck to you I hope for the best but I wouldn't take those pills if it were me. BJ