Comments on: Pseudotumor Cerebri Overview and Diagnosis

By: Stephanie Nelson

Stephanie Nelson — Wed, 07 Mar 2012 00:24:58 +0000

Well, I definately have to say I know now that the diamox works to lower spinal fluid from around the brain. I was on on the Diamox for quite a few months, but was still having daily headaches. 3 weeks ago i went back to the neuro-ophthmologist for a follow up appt. the Dr. took me off the diamox becuause my eyes still looked great and the side effects….. well suck. I loved the idea of being off the diamox because i hated the stabbing needle paines i would get in my feet if i would forgot and sit with my feet under me. But what sucks worse….is now that i’ve been back off the diamox for about 2 weeks I have the gushing heart beat in my ear again 24/7. and sometimes it’s so loud i can’t think or sleep. So to anyone out there who is skeptical about diamox, know, that it does what it’s suposed to do, it does decrease the spinal fluid.
Now for the headaches, Dr. put me on a low dose nightly amitriptyline in combination with the twice daily dosing of 100 mg topamax. This has been a God Send. I can count the number of headaches on one hand that i have had, since my appointment. Plus taking the amitriptyline at night makes me feel refreshed in the morning, like i actually had a good nights sleep. I haven’t felt like that in years!!

By: concerned

concerned — Thu, 16 Feb 2012 19:23:04 +0000

I was just diagnosed yeterday with this and I am so scared reading all of these comments. I go for the lumbar puncture next week and in the meantime My vision is horrible, my head is killing me and my eyes feel like they’re going to pop. They wront me a script for Diamox but I cannot start taking it until after the spinal tap. Anything I can do until this test?

By: Dawn

Dawn — Sun, 12 Feb 2012 01:33:20 +0000

I took my daughet off the DIAMOX as it caused more problems then good. We know do massage and accupuncture. Add a little magnesium in there too. Good luck!

By: keisha v

keisha v — Tue, 24 Jan 2012 16:33:54 +0000

stephanie i also was on diamox but i was taking off due to the damage it was doing to my kidneys im on topamax at 150mg twice a day and to b honest the is no relife all i say to anyone with this conditions and r taking the meds watch the side effects

By: jgivens

jgivens — Tue, 24 Jan 2012 03:17:42 +0000

i was diagnosed on 8/2/2011…i have had three spinal taps, one left me with ah damaged nerve in my back… very serve headaches, back pain, and vision loss..i was out from work bc of this illness, i lost my job i ended up applying for my disability… anyone else with these problems

By: laurese dean

laurese dean — Fri, 20 Jan 2012 17:41:58 +0000

I was diagnosed with PTC April,2011 . Ive been put on diamox also its not workin 4 me .Havin PTC has affected my life n a terrible way i cant move 2 fast i get dizzy, If I drive down the street thats make me dizzy,I dont understand it.I ask myself y me.every thing i do pretty much makes me dizzy . So i am so scared 2 do stuff cause i think i might hurt myself. the headach r really painful. my eyeball hurt sometimes… I didnt no a eyeball could hurt..TO every one thats has this condition i really do understand.. it is not fun and it is very confusing..things to do to make it better…..#1 theres nothing…… im so scared that it might get worser I dont no what to do…. Or what to look 4, memory losss,tired,scared.pained,confused,pressur. I think thats my future… good bye 4 now

By: Kim Korobi

Kim Korobi — Thu, 29 Dec 2011 06:08:12 +0000

I have recently been diagnosed with PTC around the 1st week of Dec. 2011. I have had plenty of accidents. I’ve was burned as an infant on my head, neck and shoulder. I had at least 2 car accidents where I had whip lash and I have broke my back twice. I am 48 and last year my eyesight went from 20/20 to weird. I don’t think I am having as many headaches as what I hear you guys having but my mental focus is off. Are any of you experiencing this. As I was getting my first spinal tap done as they were taking the fluid out which the pressure was at 49.5 I could actually feel myself being able to focus better and my site was getting better. This is all so new to me, I am still not understanding everything. I haven’t even talked to the doctors about that Diamox yet. I am going to continue reading more blogs for now I wish the best for everyone suffering from this crazy thing called PTC.

By: joyce boleware

joyce boleware — Tue, 27 Dec 2011 12:24:25 +0000

Does sweets cause fluid build up, does stress cause your condition to worsten?

By: Stephanie Nelson

Stephanie Nelson — Wed, 23 Nov 2011 23:04:30 +0000

Just an update to my earlier post (8-18-11)…..So I saw the neuro-ophthmologist and she started me on a medication called Diamox (this is the typical medication used for pseudotumor cerebri), this is to reduce the spinal fluid and help the swelling of the optic nerve of the eyes. Beware, of this medications side effects! After about a month they added Topamax to the Diamox. The Topamax is designed as a migraine preventation medication. I was on a pretty low dose to start 25mg twice a day and was recently (2 days ago) moved to 50mg twice a day. so far this medicaiton is not doing anything for the headaches. Luckily my vision is fantastic (according to the tests) and the high pressure in my spinal cord has not damaged the optic nerve, but the headaches are terrible and my eyes hurt often, especially when i have to stare at my computer screen half the work day. My neuro-ophthmologist is very optimistic that the tomapax at the right dose will take care of these headaches, once we find out what that right dose is. Unfortunately there is no ‘cure’ for psuedotumor cerebri, possible weight loss will control pressure, but over 50% of people continue with migraine headaches for the rest of their life even after significant weight loss and spinal pressure. The best i can get from all this is to find something that works for these terrible headaches.

By: natalie

natalie — Sat, 19 Nov 2011 21:34:42 +0000

Rachel if you are reading this my story is the exact same as yours, the thumping in the head , ringing in the ears after i started taking the diamox. i am curious to see how u are managing now???