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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Brain & Nervous System
/ Pseudotumor Cerebri Support Group

anyone else go in for monthly LPs?

soccergirl78
soccergirl78
So, my neuro or my neuros nurse keeps in contact with me every week. I like that about him and his practice. Today, when he spoke to me I told him that I was no longer waking up with headaches in the morning since I started elevating myself at night but I am still am having horrible after noon pressure headaches behind my eyes and the whooshing sounds in my ears.
He increased my keppra today but not the Topamax. He still wants me to get use to the dosage he already increased me to

He wants to do the following.

-Bring me in every month for a LP. (My thoughts, I just had one a week ago to today and not to whine but its still tender) I can take a lot of pain but I work in a hospital. I tug/lift/pick-up/ walk with patients and they are always leaning on me.

- then do the ONSF surgery

- and he said I am fitting all the signs of needing a shunt.... (I want to do everything I can to avoid the shunt but I cant take the Diamox because be allergic to it)
soccergirl78
soccergirl78
Mary, I do have a small hump forming between my shoulder blades and neck area, tones of hair on my neck that I either get waxed, shave or pluck out... and my GYN had to put me on birthcontrol to stop me from having a period continuiously. (which my neuro wants me to stop taking bc he says it is causing my headaches. I am on an extremely low dosage)

RN, I see the endocrinologist soon so I am saying some prayers that she will listen to me and be willing test me.... hopefully. thank you for sharing yalls wisdom and insight with me.
Sophiasmom06
Sophiasmom06
SG, hey, yeah you need to get off the birth control pill! you can control the periods with natural progesterone used during the second half of your cycle, you don't need to be poisoning yourself with estrogens and with synthetic hormones which are actually drugs, not hormones. the regular prescription form of natural progesterone is called Prometrium. the reason you are bleeding so much is likely from not ovulating. when you don't ovulate, the corpus luteum does not form and progesterone levels do not go up during the luteal cycle. progesterone is needed to mature the endometrium and stabilize it. without that, estrogen is unopposed and it just builds up and builds up the endometrium until it sheds and you bleed excessively because the blood vessels do not contract properly without the progesterone. it is estrogen that is a problem in IIH and you do not need it for this problem. you need progesterone, and do not take synthetics. natural progesterone will not only mature your endometrium, but it will reduce brain edema and improve upper airway tone to reduce sleep apnea. it may be the lack of progesterone which is contributing to the IIH. see if the endo can switch you to this. I can try to find some references to show her that the progesterone alone might help the IIH.

is your blood pressure elevated? I have found if my BP goes up, my ICP goes up. you must keep control of this.
soccergirl78
soccergirl78
For the most part my blood pressure runs low 90s over 70s or over 80s. sometimes it spikes and drops even lower... then levels back out to my 90s/80s and spikes again. I've never understood why though.
Sophiasmom06
Sophiasmom06
ooooo. many here have POTS. I also had issues with my BP that I figured was adrenal as it went away on hydrocortisone. but I suspect in IIH there are hormonal anomalies associated with empty sella syndrome whether or not this is visible on an MRI. you may want to see what your BP does when you stand up.

see reply #4 here for instructions on how to measure your orthostatics:
http://www.dailystrength.org/c/Psuedotumor-Cerebri/forum/17723927-throw-me-bone
deleted_user
deleted_user
No way no monthly LPs, I was told either regular LPs or a shunt I opted for the shunt. You know they just take way too much recovery and sooo painful. And poor girl with your job you can't do that...I won't tell u what to do but in your heart you will know. You have all our support here though hun :)
Hugs!
Mandy