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Old 10-21-2012, 04:05 PM
Location: SW Missouri
15,535 posts, read 29,278,439 times
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Originally Posted by adri0380 View Post
I have recently been diagnosted with pseudotumor cerebri by a neurologist. He gave me some meds (i forgot the name) and i had stopped taking them bc 1-high price in medicine now-a-days, can't afford it and 2-bc it gave me some strange side effects (feet numb and tingly, change in my taste buds). I also stopped seeing him due to high cost on my copays. He suggested i'd see him every other month,i have not seen him in about a half a year.
I was told if i do not treat it, i could lose my eye sight completly, and possibly @ some point use a shunt...I am fine as of now, but i got a long way to go, I am 28 yrs old.
He also said there is really no cure for pseudotumor cerebri, i'll always have it. And he said i should start worrying when i walk into walls. I am cumplsy to beging w./ but now i notice it more then ever, and i also notice that i am constantly banging my hands on stuff.
I guess i am asking if anyone has this disorder or knows more about it that they can share w/ me please? Should i be worried on the long run and just overlook the side effects of the meds?
Whenever I am faced with a physical issue of any kind I turn to my naturopathic physician who finds out the cause and corrects it. Masking symptoms does no one any good and usually simply causes another problem to surface elsewhere.

Since, according to the Mayo clinic this condition is usually caused by intracranial pressure you have to find out what is causing this. Typically, any type of pressure is caused by some type of fluid retention. This can because by an imbalance of electrolytes, among other things. A good work up by a holistic, nautropath should be able to discover where the problem lies so that it can be corrected.

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Old 11-25-2012, 09:52 PM
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I realize this is an old thread but it is an old problem. There are not many known "cures" for PTC. I've tried and tried to find anyone who has been "cured" but at best I've found most often it's only temporary though it can be long term and any term is good. I was diagnosed with PTC 7 years ago. I was 45 at the time. The neurologist put me on Diamox 500mg twice a day. I couldn't seem to function with this so I cut it to once a day before I went to bed. Please understand, I do not encourage anyone else to do what I did without prior doctor discussions. When I told the neurologist at the next visit what I'd done he wasn't thrilled but since it seemed to be "working" ok he let it go. Eventually I talked him into regular Acetazolomide so I could cut them in half and take half twice a day (not to mention it was considerably less expensive and I had no insurance). I proceeded to cut down until I was taking 1/2 a tablet a day and then after he left practice in my state, I quit taking it because I couldn't afford a new neurologist. I have not taken medication for several years now. I did lose 75 pounds, and exercising regularly is critical. I also find that certain things I eat tend to have an effect. For one thing my system doesn't function too well eating too much meat. I'm overweight still but it's hard to lose more because I use a primarily protein based diet in order to lose. The worst for me are starchy or sugary carbs. One serving more than now and again (and I mean extremely now and again) and up goes the head pressure.

I will say that at one point, when the medication seemed not to work, the doctor was going to place me on a second med. I had refused any further spinal taps after my first one and I refused to try any other meds. What I read on the meds was worse than the problem if you tried to stop them and sometimes even while taking them. This was when I decided to go the fix it yourself route. Though that's not a recommendation for you to do the same at all. PTC/IIH/BIP can be very serious and very tricky and not everyone is as lucky as I am. The elevation in some people is life threatening, mine appears not to be that high. Please work with your doctor(s) if you wish to lower your meds. I got lucky, you may not.

I feel the pressure in my head and it makes it hard to concentrate or remember things at times. In the early days, I was afraid and anxious and there were many days I wondered if I would wake up the next morning. I had updated my will and left instructions for things in a file on my computer because I thought I might not be there to complete things that needed to be done. My eyes still feel the pressure too but I do not have the daily head pain that most have.

It's my belief that each of us has a different experience but there are some things that are universal with this problem. The first thing is to try not to worry (that's hard). The second is work with your doctor. Third is understand there are alot out there just like you. There are now more resources than ever on the net, more groups for support and doctors now at least know all three names for PTC. Find the support groups online and off, keep searching for answers, if you're overweight try to lose as much as you can, keep as active as possible, and give yourself a break when you need it without allowing yourself to feel guilty. Sometimes just a 20 min nap in the afternoon will lower my head pressure enough to finish the day, try it. Keep your chin up and most of all remember You're not alone.
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Old 01-08-2013, 10:26 AM
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Unhappy Couple Questions

I was diagnosed two years ago and followed the treatment. Diamox, pain meds, spinal taps, depression meds, blood pressure meds. I lost my insurance about 6 months ago, and lost all treatment. my symptoms have returned and I have insurance available. i am starting over with the eye Dr. Does anyone have any idea if it will be as hard on my body starting treatment again as it was the first time? I was very sick for several months after treatment began and I wanted to weigh my options.
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Old 01-09-2013, 02:02 AM
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Hi April, I discontinued all meds eventually for the same reason you did though I was cutting down at the time anyway. As I said earlier, I continually phased out my meds anyway. My guess, though I can't state fact here, is that you will likely go through something similar as your first time because they are the same meds. However, knowing what to expect may not make it as "traumatic" in some ways for you. I would suggest that you join some of the support groups if you haven't and if you're not on one, an anti-inflammatory diet might help too. Just my thoughts though. I wish you the best. It's not an easy condition to deal with and it would seem no two people experience the condition in the same way.
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Old 02-01-2013, 04:33 PM
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I was diagnosed with pseudotumor cerebriun.....before they found out that I had pseudotumor cerebriu I had bad headaches every day and I we to the doctor for my headaches and they said that I had migraines so they gave me medication for migraines, and it did not work I continue to have bad headaches so I call the doctor and told the doctor that I was still having bad headaches and I was throwing up. So he said that I needed to see a eye doctor and I made appointment for the eye doctor. They looked in my eyes all didnt see anything so the doctor said that it was just migraine so I just dealt with the pain. Then 2yrs pass and I continue to have a bad headache 1 day I had a very bad headache and decided to take a nap and when I got up I could not see nothing out of my left eye for a little bit. I called the doctor the same day it happened and he sent me back to the eye doctor all day look in my eyes and seen that my optic nerve was swelling behind both eyes that why I could see nothing. it would go black when I got up out of bed or bent down to tie my shoes they said that I had a lot of perssure in the head and they told me if I didnt do anything about it I colud die from it or lose my vision. The eye doctor sent me to a neurologist and he said that I need to have a MRI done so I did that and it showed nothing and the next was to have a spinal tap so I did that and they said the pressure was higher than normal that we the neurologist said that I had pseudotumor cerebriun. and you put me on medication the name is diamox 500mg I started to take 1 a day but I was still having headaches so he said take 2 a day and I did and I continue to have headachesso he said take 3a day and it started to work with the headaches and made the swelling behind the I go down some.when I went for my appointment they said I was taking a lot so they lowered it back to 2 a day and the headache start coming back and I got a new pain behind my head I am also seen a eye doctor that deals with nothing but the nerve behind the eye, and they told me that the new pain was the pressure in the head it was messing with the nerves behind my head so now at this point I do not know what to expect in the more I am currently looking for a second opinion doctor. they say this is mostly found in women then men and people that are overweight, the doctor also said most people when they lose the weight all of it goes away. They put me on diet pills I have lost 18 pounds and I'm going to keep losing more. if you know anything that might help please write me back.
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Old 05-15-2013, 01:29 PM
Location: california
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ik how u r alll feeling cuz of this.....it suck pressure in the head and stiff neck and lower back pain.....just pray and find a good doc
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Old 05-24-2013, 12:44 AM
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I was diagnosed about 3 years ago. I had 9 spinal taps in the first half of 2012 alone, but now that I have a lot of scar tissue, it is too difficult for them to get in, so... no more spinal taps. I lost 45 pounds the end of 2012 and Jan. 2013, and kept it off. I thought I was cured. Now, although I haven't gained the weight back the pressure is back. I can feel it and all the side effects I had before are back I have blurred vision and stabbing pain in my ears and I hear my pulse in my ears. But most of all the pain is unbearable. Now, 2 months ago, my daughter who is 28 was also diagnosed. We live in Montgomery, Alabama and I have been to most of the doctors in Montgomery, Alex City, and Birmingham. I am trying to get back in to the Callahan Eye Hospital in Birmingham because they specialize in IIH. I guess I thought that loosing weight is all it would take to cure me. It didn't work for me. It just took longer for the pressure to build back up.
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Old 05-24-2013, 12:46 AM
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I wanted to know if body aches (feels kind of like the flu) is a common symptom. I get body aches, all over, and very tired.
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Old 08-14-2014, 03:51 PM
Location: wellington,al
1 posts, read 1,269 times
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Unhappy pseudotumor cerebri

I was diagnosed with pseudo tumor cerebri about 3 years ago and i am currently taking diam ox ive even lost weight i did weigh 230 and now i weigh 148 and mine is getting worse i have bad headaches , blurry vision and now they are wanting to do the surgery on me because everything's not working they are wanting to put a shunt in and i dont know what to do my family dont understand what i am going thru has any one had the shunt that can tell me more about it, need advice.
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Old 10-21-2014, 05:01 PM
1 posts, read 1,113 times
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I was recently diagnosed with PTC. After years of being told it was a migraine variant among other things and multiple ER visits. It turns out that mine was linked to birth control and if there is anyone in a similar situation please look into this. It has helped me tremendously in an otherwise impossible situation.

[mod]no soliciting for attorneys[/mod]

Last edited by SouthernBelleInUtah; 10-21-2014 at 08:08 PM..
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