Hi All, I have been going through a particularly rough patch with headaches/NDPH lately. I have been fighting this disease for 10 years now. I am sort of stuck as to what to do, as are my doctors, Note: I have been to Diamond, MHNI, Jefferson, and many other doctors for this and have an implanted occipital nerve stimulator that was put in at Jefferson. The stimulator has helped a great deal, in that it allows medications to work- mostly IV Depakan or steroids along with pain meds. Right now, nothing seems to be working. I know that my neurologist is really frustrated with this situation as well. No one knows what to do. I am still experiencing some fainting spells- probably due to dysautonomia/POTS syndrome. I am trying to get in with a neurologist at Vanderbilt who treat both conditions. The fainting spells have improved with salt, gatorade and florinef. I also went off most of the meds to make sure that they were not causing the problem. I know this turned out to be more of a vent. I know there are no quick answers. I was just wondering if anyone else has experienxed this? I have thought about the ER, but that does not seem to help things much. Hopefully, I will hear back from the drs on Monday. I am just so tired and scared. I'd appreciate any ideas or anything. sorry about the long vent. pain free days, sailingm |
