My 15 yr old daughter was diagnosed with PTC in November. She is currently on 2000mg a day of diamox which is down from 2500 mg. She has lesser head pain pretty much every day and sometimes has extreme pain. She was seeming to go in cycles with this pain. One thing I had noticed so far is that each time she got an increase in symptoms, bad weather had come through. She would start with the lethargy maybe a few days before, then stomache upset & vomiting along with an extremely severe headache. I was wondering if anyone knows if changes in barometric pressure with weather changes can cause an increase in intracranial pressure?
Even though this is a fairly new diagnosis for us, it really seems that the changes in the barometric pressure really affect her pain level.
I really hope one day they can do more research for PTC because it seems so many suffer even with treatment.
Not sure if you are familiar with ihrfoundation.org or not but it is the only organization I know that is currently trying to find a cue for IIH/PTC. If you have not done so I encourage you to check it out and register your daugther.
BTW, I have IIH and split my time between 2 homes at different elevations (sea level and 5500 feet) therefore different pressures and I have yet to draw any conclusions that my headaches are worse at one home or the other. However it is "ideopathic" and there is still much to be learned so that is why I encourage you to register.
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