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Old 10-07-2008, 01:15 PM
 
Location: Queens, NY
39 posts, read 196,840 times
Reputation: 40

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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?
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Old 10-07-2008, 01:22 PM
 
Location: in a house
3,574 posts, read 12,838,127 times
Reputation: 2332
Quote:
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?
Sorry to be blunt, but are you serious? You should be on a weight loss/control program as well as taking your medications and following up with your healthcare provider.
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Old 12-17-2008, 10:18 PM
 
Location: Massachusetts, USA
2 posts, read 22,998 times
Reputation: 16
I sincerely hope this isn't a joke, because if it is, it's a sick one. In the event that it's not, I can tell you what I know. I am 23 and I was diagnosed with pseudotumor cerebri (more accurately called idiopathic intracranial hypertension, or IIH) when I was 18. As the previous poster said, you should be on a weight loss/control program. IIH is most common in overweight women of childbearing age. If you're overweight, trust me, losing weight helps. It has helped me. If you're not overweight, you need to do your best to maintain a healthy average weight so as not to exacerbate the disease. You also need to take the medication that was prescribed to you. From your description it sounds like the same medication I take -- acetazolamide, commonly known as Diamox. In higher doses, it does give those side effects, and while they are quite unpleasant, you can quickly get used to them. In lesser doses, the taste bud change disappears and the tingling of extremities rarely occurs (and it is much less painful and obnoxious than on higher doses). To the best of current medical knowledge, there is no cure for IIH. They also do not quite understand what causes it (thus the "idiopathic" in the name). While you're fine now, it can and will get worse if left untreated. In some cases, a couple years of treatment all but rid you of the disease (you're right that you will always have it, but you may not always suffer symptoms. Some have relapses, but many do not.). If you do not treat it and it worsens you will go blind, have outrageous debilitating migraines, and likely need surgery (the shunt you mentioned). It is not a pleasant thing. While I have been one of the lucky ones (I have a smallish blind spot in one eye and do not have headaches while I take my medication), I have met people who were not diagnosed or disobeyed their doctors. The girls I met are blind and typically in agony. It is NOT a pleasant thing. PLEASE go back to your doctor. The only thing that can keep you from suffering their fate is being closely followed by a specialist.
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Old 02-11-2009, 07:38 PM
 
1 posts, read 19,354 times
Reputation: 14
I am 17 years old i keep gettin these headaches i was just at the er for severe eye movement pain!!! All they did was givce me pain killers and sent me on my way home i went to the eye doctor he took a picture of my eyes and said i had this pseudotumor cerebri ****?? i go tommorrow to get a mri done to see wats going on im so scared will some one help me im so nervous im about to freak out... Can u die from this or something and will i be okay....

Last edited by LadyRobyn; 07-25-2009 at 07:24 AM.. Reason: removed email...
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Old 02-12-2009, 06:36 AM
 
Location: Somewhere out there
2,947 posts, read 1,459,212 times
Reputation: 3452
I never thought I'd see others with this illness.
I started with this back in 1985, First symptom was my right eye vision tunneled out. went to the doc, (back in those days they didn't seem to know as much of this illness) When he checked my eyes he saw "papledemia" ... He put me in the hospital right away. I had the severe headaches as well. Always expect if you go to the ER with the severe intense headaches you will get, a C A T scan and a spinal tap. It's a must. I was 147 lbs at the time, In 85 I was discharged from the hospital after 5 days, DR told me they didn't find anything wrong. Put me on diuretics. They made me very sick. I stoped taking them. 1986 Severe headachs and ER again. I went to the Mass. Eye and Ear, in Boston MA. Again was told they didn't find anything, then added "sometimes short women cannot carry the excess weight, get rid of the weight, get rid of the problem." Diuretics again, made me very sick. I got down to about 120 LBS. (if I get to about 135 to 140 I feel it coming back) had some headaches but not as severe. Until 1997, Four in the morning I was woken out of a deep sleep with blinding pain. Back to the ER and third C A T and spinal tap. Luckily I got a good nuerologist who after a few weeks told me what it is. He called it Benign Itercranial Hypertension...also known as psuedo tumor. He mentioned monitoring it with diet, exercise and keep the weight down. The diuretics made me very ill again and he took me off of them. I was told about a shunt from the brain to the stomach if we cannot control this. To this day I have aweful headaches. Every now and again when I get my eyes checked, I am sent to a neuro opthamologist. Just went last month. Yes this can be deadly, yes you can go blind; and you do not want to risk your life or your sight. DO AS YOUR DOCTOR TELLS YOU PLEASE. If one diuretic makes you sick, ask your DR if there is another. DO NOT SKIP DR APPOINTMENTS. Ask for an application for lower slideing scale fee if you cannot afford appointments or meds. ASK if they can give you samples of the meds they want you to take. Some DR's have them and will supply them to you. I was around 28 when this first showed up, I am now 52. Look this up online. Research it, learn as much as you can. It will provide you the knowledge to have conversation with your DR. Write down any questions that you may think of. Always tell future DRs. ER staff or any medical personal you see that you have this condition. Including eye DRS. They see it upon eye exams and need to know that you know you have it. They panic if they see it and are unaware you know of it. They think it could be a BRAIN TUMOR. Take care of yourself and diligently my dear, it's important.

Also please know, when I went to the diet center, one thing they explained that I never thought of. Our bodies are like a barometer. When the weather conditions cause a barometer to rise, the fluids in our body does as well. So that fluid is going up into your brain and you will get headaches. I also found if my clothing is to tight, if there is any kind of pressure across my spine, the pain shoots right up into my head. I do not even let my DH put his arm across my shoulders if we are out for a walk. Pay attention to what your body tells you in certain circumstances.


Gabbygiddens...Do not put yourself into a panic. THIS IS TREATABLE, do as suggested by you DR. Trust me I know the fear involved. The sooner you find out, the sooner you can get treatment. The reason for the tests is to rule out any number of possabilities. I'll keep you in prayer sweetie. And please let us know how you make out with your appointments.

Last edited by sapphire-rose; 02-12-2009 at 06:49 AM..
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Old 02-13-2009, 11:52 AM
 
Location: Somewhere out there
2,947 posts, read 1,459,212 times
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I just recieved a copy of the letter the neuro opthamolagist sent to my Primary DR. Suggesting we try Topamax 25 to 100 mg. So as you can see 24 years later from my first symptoms in 1985 A neuro optha. feels I still need to be on medication. Again I ask you newer diagnosed folks PLEASE take care and keep on top of this condition.
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Old 02-24-2009, 06:12 PM
 
1 posts, read 19,384 times
Reputation: 11
Default This is nothing to mess with........

Quote:
Originally Posted by sapphire-rose View Post
I just recieved a copy of the letter the neuro opthamolagist sent to my Primary DR. Suggesting we try Topamax 25 to 100 mg. So as you can see 24 years later from my first symptoms in 1985 A neuro optha. feels I still need to be on medication. Again I ask you newer diagnosed folks PLEASE take care and keep on top of this condition.
My 10 year old son was Diagnosed with P.T.C and it has been a battle.He has had a spinal tap every 6 months for the last 2 years.Topomax,Diamox and Zoloft because when the pressure buils up he gets weepy.Yes he has lost a lot of weight but he's 10.I get soooooo frustrated with these doctors because I feel like he's a guinea pig with all the "Lets try" crap..I live in Florida and if anyone has any suggestions I'm all ears....Thanx
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Old 02-25-2009, 11:20 AM
 
1 posts, read 19,194 times
Reputation: 10
I was diagnosed with pseudotumor cerebri on jan. 31st, 2009. I am still trying to understand it all and its really starting to scare me because the neuroligist wants me to have a shunt put in. The thought of that scares the crap out of me. I would like to talk with someone who has this same problem. Im so confused and dont know what to do.
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Old 03-13-2009, 11:47 AM
 
2 posts, read 23,318 times
Reputation: 11
Default specialist with pseudotumor

was just diagnosed with pseudotumor and after trying Diamox had a shunt put in. Still not much relief although trying to have the pressure regulated to see if this will work to stop headaches etc. does anyone know of a neurologist in nc or elsewhere that specializes in pseudotumor would appreciate any input. hoping the shunt will work but just looking at options if it does not
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Old 03-18-2009, 04:53 AM
 
Location: Somewhere out there
2,947 posts, read 1,459,212 times
Reputation: 3452
Quote:
Originally Posted by mother&wife View Post
I was diagnosed with pseudotumor cerebri on jan. 31st, 2009. I am still trying to understand it all and its really starting to scare me because the neuroligist wants me to have a shunt put in. The thought of that scares the crap out of me. I would like to talk with someone who has this same problem. Im so confused and dont know what to do.


Quote:
Originally Posted by mycoda View Post
was just diagnosed with pseudotumor and after trying Diamox had a shunt put in. Still not much relief although trying to have the pressure regulated to see if this will work to stop headaches etc. does anyone know of a neurologist in nc or elsewhere that specializes in pseudotumor would appreciate any input. hoping the shunt will work but just looking at options if it does not
Best bet would be to dig deep into the search tools on your computer if looking for specialists. There are so many "groups" for many different things I would think answers could be found with a lot of researching on ones own. I was fortunate in 1997 to have found a fantastic Neurologist. But since then, I've moved out of that state and haven't gotten another Doc. A shunt has not been discussed with me since. Doc in 97 did not want to go that route until we tried meds and weight control. But I'm not only having headaches every day (again), but now issues with my eyes. Blurring and a prisum type light across my vision.

Quote:
Originally Posted by Ruggy03 View Post
My 10 year old son was Diagnosed with P.T.C and it has been a battle.He has had a spinal tap every 6 months for the last 2 years.Topomax,Diamox and Zoloft because when the pressure buils up he gets weepy.Yes he has lost a lot of weight but he's 10.I get soooooo frustrated with these doctors because I feel like he's a guinea pig with all the "Lets try" crap..I live in Florida and if anyone has any suggestions I'm all ears....Thanx
So very sorry that your 10 year old has this. Did you ask the doc's why spinal tap every 6 months? My experiance has been that Doc's do the "lets try this" to get meds started at the lowest possable dosage and side effects factors. If it helps then a patient does not have to move to the riskier meds. Please research online, and ask questions of your Doc. Write them down and ask. If the doc seems like they do not give you answers or cop an attitude, time for a new doc. Patients have rights and sometimes aren't aware of them.

I wish you all best of luck with this journey and hope and pray all will turn out well for you.
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