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...
I think I'm officially at my mental breaking point. I've been told my shunt is working, I am on pretty much every preventive migraine med, and have received botox over a week ago with no relief. My neurologist called me today to tell me that he has nothing left to try with me. His next recommendation is to see a headache specialist, who of course does not take my insurance. I'm beyond devastated. I have tried to maintain being a special education teacher over the past 3 years, while this disease has taken over my life. Like most of you this same disease has stolen so much from me- my fun, spontaneity, going out ,concerts, planning anything, planning a family, my honeymoon in Italy, and now it'stealing what I was best at being a special education teacher. My students are my kids, I have them for 4 years in middle school and I absolutely adore them. I'm so mad at this disease, and I feel so helpless at the same time.
Sorry for venting, but I'm really struggling right now.
Nicole
Sorry for venting, but I'm really struggling right now.
Nicole
Now, what can you do next. I think maybe it's time to seek out another neuro and get a second opinion. I have been seeing a headache specialist, but she hasn't done anything different than your doctor, so I would try not to be too upset about that. Mine is ready to send me to a pain specialist, so maybe that could be your next step?
Last night I also did an overnight sleep study. I don't know how it went yet, but I'm started to try other avenues besides the neuros office. I don't want any more of their pharmaceuticals that don't seem to do a darn thing for me. I do seem to have symptoms of apnea, so I just asked my PC physician about I and she referred me to University of Michigan, on Sophiasmom's advice to me.
I should mention that I switched to a Holistic primary doctor who is also an MD. This is the regiment I followed that kept me on my feet from spring through summer:
Magnesium
Vitamin D
Butterbur
Chiropractic care
Cranial sacral therapy
Massage
Laser therapy on overly tight muscles
I slacked off the last month of summer as we were really busy and I feel I am paying for it now and have to start all those things up again, which I have. I feel as though my pressure has increased but my neuro (headache specialist) doesn't think so because I am not hearing the whooshing at this time and my nerves look good. But I have other symptoms that have returned. Puffy eyes, wetness in my ear, pressure in my temples. Right now my plan is to see what the sleep study showed and maybe slide into the neuro science dept. at U of M.
Good luck dear. I wish there was something we could do for you.
Amy
I so wish there was something I could do to help. I do sympathize. There were times when the pain was so bad I felt I couldn't go on, and there was no end in sight. Then things got better.
I agree about a second opinion. There must be another neurologist that is covered by your health insurance plan. I also agree with magnesium - research has shown it helps prevent migraines. Chiropractic can be either really helpful or harmful, it depends on the dr.
Anyway, do talk to a second dr. and see what he says.
Big hug.
Could it be time to start backing off your meds? My point is that my brother was on anti dep. for years, it caused dystonia, he was also on psoriatine for psoriasis he had muscle wasting, he was bent over and paralyzed. After removing meds he back.......he has had same shunt for over 30 years with no diuretics, only certain foods. It is possible themeds that are meant to help actually are hurting you. I would call the neuro and ask for titration schedule, then if ha still present ask for prednisone or something like that, if you feel better after, great, if not go at em full speed ahead. Keep going to ER, make em prove shunt is working. I know this sounds dramatic, but sometimes you got to be when the main treating Dr. starts pushing you out.