U.S. CitiesCity-Data Forum Index
Go Back   City-Data Forum > General Forums > Health and Wellness
 [Register]
Please register to participate in our discussions with 2 million other members - it's free and quick! Some forums can only be seen by registered members. After you create your account, you'll be able to customize options and access all our 15,000 new posts/day with fewer ads.
View detailed profile (Advanced) or search
site with Google Custom Search

Search Forums  (Advanced)
 
 
Old 07-22-2011, 07:24 PM
 
1 posts, read 2,979 times
Reputation: 10

Advertisements

my wife was just recently diagnosed with this she is still not feeling good after 5 days in hospital they released her how long does anybody know before shes starts to feel normal they blamed on the birth control does it take awhile for meds to kick in
Quick reply to this message

 
Old 09-15-2011, 05:54 PM
 
2 posts, read 5,826 times
Reputation: 10
I was diagnosed with pseudotumor cerebri about a year ago. I've gotten 4 spinal taps which seemed to help and lost 30 lbs really quickly because my doctor had me on a 1000 calorie a day diet, once I upped my calories to a normal amount I gained it all back. I was okay for a while after gaining the weight back but recently started getting the headaches again. At one point I had lost half the vision in my right eye but after 4th spinal tap I was able to recover most of it. I couldn't take the medicine because I'm allergic to it and the alternative one did not work. I'm working on losing more weight, but it's a long and hard process. I go back to my neurologist soon and that will determine whether or not I need to get a shunt. For those of you who asked if there was anything else that can be done, it is also linked to certain medications(birth control being one) so I would look into that. It's a hard thing to manage and a very painful thing to manage but with persistence it can be managed.
Quick reply to this message
 
Old 09-15-2011, 05:56 PM
 
2 posts, read 5,826 times
Reputation: 10
It took me a while to feel better, it wasn't until after I got my first spinal tap that I started to feel better and even then I still have constant chronic head aches, which have recently come back. Since her's is due to birth control it will probably clear up quicker.
Quick reply to this message
 
Old 09-18-2011, 09:20 PM
 
1 posts, read 2,908 times
Reputation: 10
Quote:
Originally Posted by alikatb View Post
Hello i am 12 and i just went to the eye doctor today and i was diagnosed with pseudotumors on bothe eyes. this friday ihave a ct scan and i am worried about what they will find .i am deathy afraid of needles and my ieye doctor metioned a spinnal tapp . i looked it up and the needles are masive . is there any one who can tell me hoeit is going to be like you know with out surgar coating it i want the real truth please thanks for your time>
I have pseudo tumor and it's not as scary as u might think. I pray u have a supported family, because it will help on what u will go thru. I have had 6 in 8mo.there is meds u can take that will help with swelling.. Hope to talk to u soon. With straight answers to your ?'s
Quick reply to this message
 
Old 04-12-2012, 09:08 AM
 
1 posts, read 2,675 times
Reputation: 10
Here is some information that you all may find helpful. I was diagnosed with Pseudotumor Cerebri at age 11. Very unusual to get it at that age. I was kind of a test subject for Stanford University doctors. That was 33 years ago, and yes, I do still have it. What Pseudotumor Cerebri is this: Your body will over produce spinal fluid and the extra fluid has no where to go so it settles behind your eyes causing severe migraine until the pressure is released. This is done by spinal taps. I have noticed over the years that I get worse in November. Not all may have that problem, but I have found that if I watched my weight through that month, it usually would not return that year. The reason it can cause blindness is because of the build up of fluid behind your eyes. This however is not permanent. One the pressure is relieved, most everyone will regain their sight.
As far as the medications that the doctors put you on, be careful, the best (and worst) medication to relieve the fluid is a steriod. While the pressure leaves, you also gain a tremdous amount of weight and then the cycle starts over. I have found in my 33 years of dealing with this is 800mg Ibuprofen gets rid of the migraine, and if it doesn't, then it is time to go to the doctor for another spinal. I went 1 step further and had a gasteric bypass to lose the weight, and the Pseudotumor still returned. I do have to take pain meds daily, but I have no side effects from it and I get a spinal 1 or 2 times a years. Other than that, I lead a very normal life and I have never lost my vision. Also, this condition is not fatal in any way. You just have to keep an eye on it and your weight. BTW - most birth control methods have a side effect of weight gain, so keep that in mind too. I hope you all feel a little better, and if you want some more info, please feel free to ask. Take care.
Quick reply to this message
 
Old 08-19-2012, 12:40 AM
 
1 posts, read 2,529 times
Reputation: 10
I also have been diagnosed with pseudo tumor cerebral back in 2010,it has been so hard to live with. Iam a mother of three and for them to see me going through this pain and have no answers for them when they ask me ways wrong its very hard. I started out with the severe headaches , then the stiff neck ,the ringing in the ears,the whooshing sounds,dizziness,and then finally the blurred vision. My vision in my eyes have changed dramatically,I can barely see anymore. Eye surgery and the shunt were both recommended but I'm just so scared I don't know what to do. There are so many things I don't know about this condition. If anybody has any suggestions or advice please help me. Thank u for your time everybody!
Quick reply to this message
 
Old 09-23-2012, 01:02 PM
 
1 posts, read 2,478 times
Reputation: 11
I got told in 2008 I went to the eye doctor because all the pain in my eyes this pain hurts real bad and they told me I had psuedo tumor had to get a cat scan but I don't have the tumors. Today my pain have got worse I'm sitting here in real bad pain does anyone no what to do for releif the pain? I go to the doctor every 6 months I got told 2 weeks ago that I should of be seeing a neurologist since 2008 I was never told that my doctor asked how my neurologist dr was treating me I said what dr u never refer me to one and I left the still never refer me I went to a new regular dr she asked me I told her I never saw one and now I am they said the have to relieve the pressure has anyone gone blind from it? That's my worst fear they said there is not cure and I will be blind one day I have three daughters and I'm so worried
Quick reply to this message
 
Old 10-06-2012, 03:34 PM
 
10 posts, read 29,391 times
Reputation: 22
Going blind is a side effect, and permanent blindness is a possibility. My 16 year old son was diagnosed a few weeks ago, I've been searching for information since. He's currently on 1500 mg of Diamox a day, 200 mg of B2, 1000 mg of naproxen, 800 mg of magnesium and just finished up a steroid pack. The medication does not seem to be working. Our neurologist said that increasing the potassium he eats throughout the day will relieve some of the side effects. They believe his was caused by a combo of weight (currently 6 foot 4 and 336 pounds hoping to get that down asap) and medication (5 procedures where he was put under in 5 months 1 since a lot of pain medications for gall bladder pain and migraines.) He's allergic to topamax which they started him on after the headaches started, he cannot take elavil because of violent blackouts (he threw his brother across the room. My 11 year old is not a small child) He has literally been in pain since February of this year non stop. I was foolishly under the impression that this could just go away with medication. We deal with Children's Hospital of Pittsburgh and am now thinking that the surgical option might be the best for him. (It scares the heck out of me) He still has issues with gall bladder like pain since his surgery (gall bladder was duplicated, because of the migraines, he was unable to hold still in the imaging MRI to see if another gall bladder is in there) My biggest worry was him being able to live his dream of playing college football with a shunt in, but research has told me he should be able to. This season, he has made it to one practice which he had to sit out because of dizziness. The dizziness and noises in the ear were his first symptom followed by debilitating migraines. With the migraines he gets flashes of light and sees dots. The lumbar puncture showed that his pressure was 27, and the optometrist exam showed a "snotty" optic nerve.

I'm terrified. In January of this year, I had a perfectly healthy (admittedly over weight) 15 year old son, and since then it's been one thing after another, and each of them become scarier and more confusing. So far his diagnoses include: Duplicated Gallbladder, Fatty Liver Disease, Pseudotumor, and a bout of H Pylori which took 2 rounds of antibiotics (and responsible for 3 procedures.) I have no idea where this is leading. I had never heard about this before this all started. And I seem to be fighting every step of the way through it between the school, the doctors, the pain clinic, and my son (he's fed up with being poked and prodded, he's tired of being in pain, he missed out on the second half of his sophomore year and so far the beginning of his junior year. Tonight's Homecoming, he hasn't made it to even watch 1 game with his team because of the noise level and migraine. He hasn't been able to hang with friends at all since February. He's missing what should be the best carefree days of his life.)

What I have found out, (there is a lot of information online) the blindness can be permanent, take it seriously. I read up on the procedure to put in the shunt and haven't been able to get past the part of drilling a hole in his skull without crying. There is a surgery to protect the optic nerve as well. And weight control is a big deal as well as hydration (drink plenty of water, then drink some more)
Quick reply to this message
 
Old 10-21-2012, 02:47 PM
 
10 posts, read 29,391 times
Reputation: 22
My son was hospitalized for migraines last week. During that time we met a young lady who also suffers from pseudotumor. She has a shunt in, has lost the vision in one eye with little hope of regaining, the vision in the other is fading, and she has blood clots on her brain (not sure if because of or caused pseudotumor.) Please take this seriously, this young lady is 15 with her whole life ahead of her with all these problems.
Quick reply to this message
 
Old 10-21-2012, 02:59 PM
 
10 posts, read 29,391 times
Reputation: 22
Quote:
Originally Posted by Ginatater View Post
I got told in 2008 I went to the eye doctor because all the pain in my eyes this pain hurts real bad and they told me I had psuedo tumor had to get a cat scan but I don't have the tumors. Today my pain have got worse I'm sitting here in real bad pain does anyone no what to do for releif the pain? I go to the doctor every 6 months I got told 2 weeks ago that I should of be seeing a neurologist since 2008 I was never told that my doctor asked how my neurologist dr was treating me I said what dr u never refer me to one and I left the still never refer me I went to a new regular dr she asked me I told her I never saw one and now I am they said the have to relieve the pressure has anyone gone blind from it? That's my worst fear they said there is not cure and I will be blind one day I have three daughters and I'm so worried
My son is on 500 mg of Naproxen 2x a day, just finished the migraine cocktail at home (toradol, reglan, benadryl) (10 doses 12 hours apart), came home from the hospital after 5 days of DHE (which took the migraine from an 8 to a 3, 5 hours after being home it was back to a 6 where it has stayed since.) Because of the DHE, he can't have his imitrex until this evening, we are praying that it works.

He's getting what the neurologist calls "ice pick headaches" behind the right eye (the one affected by the pseudotumor) ringing in the eyes and he just informed me last night when it was passed that he's getting blackouts in his vision. (he didn't want to scare me, it's another biff he gets once this is all over.)

The pseudotumor is not a physical mass, it's the excess spinal fluid acting as a tumor. A spinal tap (lumbar puncture) will tell them the pressure. pseudo actually means fake. There are several drugs that will relieve the pressure, Diamox seems to be a favorite, the spinal tap alone will temporarily relieve the pressure (they removed 40 ccs of fluid first time, 12 ccs the second from my son.) Without medication or surgery, it can/will build up again.
Quick reply to this message
Please register to post and access all features of our very popular forum. It is free and quick. Over $68,000 in prizes has already been given out to active posters on our forum. Additional giveaways are planned.

Detailed information about all U.S. cities, counties, and zip codes on our site: City-data.com.


 
Please update this thread with any new information or opinions. This open thread is still read by thousands of people, so we encourage all additional points of view.

Quick Reply
Message:
Over $104,000 in prizes was already given out to active posters on our forum and additional giveaways are planned!

Go Back   City-Data Forum > General Forums > Health and Wellness
Follow City-Data.com founder on our Forum or

All times are GMT -6.

2005-2018, Advameg, Inc.

City-Data.com - Archive 1, 2, 3, 4, 5, 6, 7, 8, 9, 10, 11, 12, 13, 14, 15, 16, 17, 18, 19, 20, 21, 22, 23, 24, 25, 26, 27, 28, 29, 30, 31, 32, 33, 34, 35 - Top