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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Yowell 03/12/2018

I was diagnosed about a month ago after about a year of not knowing what in the world was wrong with me. My neurologist said since he thinks my pseudotumor was caused by mirena is should dissappear on it's own. Some of my symptoms have gotten better but then they seem to come back and then go away again. I still have ringing in the ear, dizziness, and a little pressure behind my eyes sometimes. My question is for Mirena users......Have your symptoms gone away on thier own and how long did it take? I have had my Mirena out for about 3 months. Please someone answer I am getting so discourgaed.... I am trying to do this medication free to see if my body will do it on its own

Mscollena37 03/13/2018

Try a very low sodium diet. And limit/ omit processed meats from diet. I find it help a lot with headaches. Also try chiropractic care/ massage for headaches. My chiro is amazing. I go in with horrible headache and by the time i check out its gone. Hope it helps

Yowell 03/14/2018

I have just started Chiro and am attempting low sodium . Thank-you so much I was just wanted to hear from someone who trying these things and having success. I will continue to try these things. I really appreciate your response.

Mscollena37 03/14/2018

I just started diomax and the side affects are terrible. My neurosurgeon wants to due a VP shunt but i am not there mentally yet. But its looking like i am having an allergic reaction to the diamox so the surgeon might win This battle. But not till after my wedding. Oh try a heating pad on your head before you sleep. It helps me. Best of luck

Yowell 03/15/2018

Did you get Pseudotumor from Mirena?

Mscollena37 03/31/2018

I have mierna, its being removed next week. I dont know. How do you where you got. Turns out im allergic to diamox.

Yowell 04/03/2018

There has been a connection linked to Pseudotumor and Mirena. I have felt better since having it removed but I am still having some symptoms.. I still have dizziness and tension headaches and neck pain. Overall I am feeling much better since having it removed.

King_K-D 04/03/2018

I had a bad reaction to diamox! My body doesnt handle it in high dosages! In lower dosages im fine but not higher!

Doingthisalone_again 04/08/2018

I have a Peusdotumor and I have never used any form of birth control other than the shot twice in my early 20s and the pill for about 4 months when I was 36.

IIHsucks 04/10/2018

I couldn't handle diamox either, especially at the doses they were giving me. I really hope that your symptoms go away on their own, but don't be discouraged if they don't. As for a VP shunt, they are very scary to think about getting, I was struggling with IIH for two year before I got the shunt, but it was amazing after I got it. I was terrified about getting it, but I couldn't take the diamox any more, and I lost tons of weight, totally changed my diet and nothing was enough to get it to be normal. After I got my shunt, they told me I had to be off work for at least 6 weeks for recovery, but I am stubborn and didn't want to wait that long. I found the perfect setting within 4 weeks of having the surgery, and was back to work at the 4 week point. I have had the shunt in for almost 4 years now and it has been a blessing.
Watching your diet, looking for the most stress free environment, will help out a lot. Also, face creams for acne usually have a Vitamin in it that can cause your pressure to go up, I think it is vitamin A but don't quote me. I had acne treatments and different creams for allergic reactions that caused me to have bad episodes of high pressure. LP's suck, but they are a short term fix for high pressure. It is not recommended, but I would get one every other week at the least.
Good luck to all of you, I really hope you all can find some relief.

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