Hi Savannah, welcome to the group!!! It's perfectly natural to be freaking out w/ everything you've experienced, but really try not to worry. It sounds like you have supportive and thorough physicians, so hopefully they'll get you on the right track soon! I'm sorry this may affect your sophmore year, but better to take care of yourself now and catch up when you're feeling better. I hope it all works out!!!


Julie

Hi Savannah! Welcome to the group. I'm glad that you've found us, and I'm so sorry to hear about all you are going through with your pseudotumor cerebri diagnosis. *hugs* I know it is so overwhelming and scary at first. It sounds like you are getting good care though, so hopefully they'll have you on the right track soon, and your schooling won't have to be too severely affected by this.

Double vision was one of my presenting symptoms too, and I know it's really tough to deal with. Do they have any plans to do a spinal tap? Spinal tap was a part of my diagnostic process and it actually gave me a lot of symptom relief, including getting my double vision straightened out. Since then (November 2009 when I was diagnosed) I have been maintaining on Diamox (Acetazolomide) and have done pretty well.

Lots of people do have good outcomes with this condition, so try not to be too afraid. *hugs* Keep us posted on how things are going for you.

They put me on Diamox last Tuesday. And I just now got my Neurologist appointment, which will be this Thursday. They don't think they will have to do a spinal tap, but that the neurologist will probably give me some more medicines.

Dear Savannah;
you may actually be one of the lucky ones, because usually if it's due to the Minocycline, then stopping it will lead to resolution of your condition. I have been listening to the IHRF conference from 2011, and recall they said after stopping the med it tends to go away within weeks, although it can be months and rarely up to a year. most of the rest of us are dealing with a life long condition. so hang in there, your end is in sight! hopefully your double vision will resolve by the end of the month so you can get to school on time.
Deb

Hi Savannah and a warm welcome to our group. It look s like you have got a really good Neurologist, especially one with IIH knowledge which doesn't happen often. Hopefully once your body adjusts to the medication you will start to notice a difference. Try and stay positive and we are all here for you. We have lots of helpful booklets and information and our members and staff are very supportive and helpful.

Heidi:D

Hello Savannah, and

I am not understanding exactly why they are not doing a spinal tap to see what your pressure is? That is something I would ask. LP was the test that was used to diagnose me, taking into account my symptoms.

I have never heard of the acne med causing this--but I am not as educated about this condition as some of the other people on this site...I hope you can just stop that med and go back to "normal".....I wouldn't wish this condition on ANYONE.

On a different note, I am from Arkansas and graduated from the UofA in Fayetteville. My daughter still lives there and I hope to move back one day. GO HOGS!

Hi Savannah and

I too hope that going off the acne med will be enough to get you past this ordeal with the IIH. Having double vision can make your life very challenging, so please be careful :roll:

Do have a good read around the site. You will find lots of helpful info here. And us folks too. Feel free to ask any questions that you may have, we will try to point you in the right direction.

Thank you all for the words of encouragement and help. I'll be sure to update somewhere on here after my neurologist appointment tomorrow!
Thank you again!

Savannah, how did your appointment go? What did the neurologist have to say? Will there be a lp in your immediate future? Most importantly, how are you feeling????

I actually just had my spinal tap this morning.
It wasn't near as bad as I thought it was going to be, but the putting in the needle and pulling it out hurt :P
My beginning pressure was 32. Then they removed 25 cc of fluid (and he even showed it to me! super cool) My ending pressure was 17. I couldn't believe how much of a difference it made!
I had to sit around for a little bit before they let me leave, but I've pretty much just been laying around all day. We've been alternating ice and heat every now and then. No headaches so far, but my back is pretty sore. And getting up and sitting back down isn't so much fun.
But, I'm really glad it's over. No double vision at all today! And I don't have to go back to my neurologist until September 15!
Hoping I don't end up developing any more headaches tomorrow or throughout the rest of the night.

Great news, Savannah!!
The tap pressure is for sure elevated, and 17 sounds like a reasonable number to bring it down to. And taking it easy for today and tomorrow is a good idea!!
I hope that the Diamox will help to keep the pressure down longer. Sometimes we get really lucky and the meds alone will keep the pressure down.
Just the fact that your vision improved with the fluid drawn off is a good sign. It does mean that if all else fails, a shunt would be able to help you feel better. (It is far better than having fluid drawn off and there be NO improvement).

Keeping

I agree..so glad you've finally found some relief!!! Wishing you a symptom free day..enjoy!