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...

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Uhhlyssaa
Uhhlyssaa

I am 17 years old and I was diagnosed with Psuedotumor Cerebri in June of this year. I was suffering from a terrible migraine for 10 days straight and nothing would help the pain. I went to 3 different eye specialist and they all saw the same thing. Then, I started to have double vision and I couldn't do anything. I was in and out of the ER 3 times within 2 weeks. My optic nerves were really close to bursting and I almost died. I then had a spinal tap done and put on a diuretic and I am still on it to this day. I need to loose weight for this to go away but I really need help and have no one to talk to. I could potentially go blind from this if it's not taken care of soon. 

antiquerose
antiquerose
Hello Uhhlyssaa. What is the latest word form your eye doctor? Are you making any progress? How are your headaches now? Many of us benefit from sleeping with the head elevated, which can be done by either using an extra pillow (careful about neck and spine alignment), putting a pillow under the head of the mattress, elevating the head bed, etc. Have you been checked for sleep apnea since that can worsen your symptoms and condition. As you lose weight, you will probably find that your breathing is easier, and you will experience better oxygenation to your body and brain too. Try to eat a natural and healthy diet. Avoid foods high in nitrates and nitrites, which are more common in processed meats such as hotdogs and bacon. Many vegetables and some fruits are also high in nitrates and nitrites. You many wish to limit these for a week to see if you get relief. If so, then arrange your meals in the future so that you eat these in moderation. This paper may be helpful to you, but remember most sites praise a high nitrate /nitrite diet for "healthy heart" reasons, however, those sensitive to such may experience headaches and other issues:

http://ajcn.nutrition.org/content/90/1/1.full.pdf

Check with you doctor first about these diet changes if you do have any heart ailments. Hope you find relief soon.
Sophiasmom06
Sophiasmom06
hi, you may want to see a neuro-ophthalmologist and ask about ONSF to protect your eyes.

also, going gluten free may help, and avoid food additives, especially MSG and Aspartame. a lot of fast food has too many additives that can make us sick. I react to chemicals, so avoid perfumes and sprays and see if this helps. don't cry, the valsalva can increase your ICP. definitely if you have any sleep issues, get checked for sleep apnea. did you have orthodontia?
Uhhlyssaa
Uhhlyssaa
The headaches are gone and I recently just got off my medicine and my eyes are better but I think im always going to have a fear of this coming back because of how severe my migraine was and no I have not been checked for sleep apnea