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...
In January I went to the eye doctor for a regular visit to get new glasses. I knew before going that it wasn't really going to be normal. I knew almost exactly a year ago there was something wrong with one of my eyes. Never saw the eye doctor again until January. Big mistake. I had been suffering from headaches and my eyes just feeling like they are ready to fall out of my head. But last year the day after I went to the eye doctor I moved across the state for a job promotion and I was too scared to take off work.
I did have an mri and thankfully there was no tumor. The doctor put me on 250mg of Diamox and it seemed to help within 3 days. I've been on it now going on 3 weeks. It doesn't seem to have an effect anymore. My hands and feet are constantly tingling and my right eye just feels strange. I am waking up now with the skin around my eyes very puffy. My spinal fluid pressure is 37. I have only seen the neurologist once for the consult before the mri. I guess I am trying to see what I have to look forward to. I'm a very single mother of a 5 year old with absolutely no support system where I live now.
For some people, diamox works great and they never have to go to have surgery for a shunt. Then you have people, like me, who couldn't handle the side effects of the diamox, and the diamox also lost its effectiveness after some time. I am really happy that I got the VP shunt, but it is a surgery and it has a recovery time for at least 6 weeks. Then you have to find the right setting for you that will work, which took me a few months to get to. I know that it is very hard to have a condition like this with children, I have 4 myself, but I also had my husband that could help get me to and from my appointments when I couldn't drive. I missed a lot of work, 6 months when I was first diagnosed, and then 3 months when I had my shunt put in. Some people can deal with working because their eyes aren't effected too bad, and some have double vision or even lose vision, which is what happened to me. After dealing with double vision and blind spots for around 2 years, I am still left with blind spots in my vision, but I can still function like a normal person.
I know it is easier said than done, especially as a single mother, but keep as stress free as you can. Also, when you are getting a high pressure headache, try laying on your back with your legs bent, in a quiet comfortable environment. This will help bring your pressure down a bit, or at least give you some relief for a little while. Also, watch the VIT A, like face creams and ointments for acne, this can make your pressure rise, I learned the hard way obviously. Neurologists, and neuro-opthamologist are the specialists to see, and they should be keeping a close eye on you. I was being seen every week for the first months, then it went to every few weeks when my pressure started to calm down. Also, they say weight has something to do with your condition, but it hasn't been proven. I hope this gives you a little insight on what might be in the future for you. Good luck!