PseudoTumor Cerebri

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b00b0084
b00b0084 Posts: 729 Member
in Motivation and Support
I was just diagnosed with PseudoTumor Cerebri and it gave me a major scare. Anyone else here have problems with that? Its one of those "Not rare, but not common" types. It gave me the push I need to better my self though. Its hard to explain so I will add a link for those that want to know what it is.

http://www.mayoclinic.com/health/pseudotumor-cerebri/DS00851
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  • Kess31
    Kess31 Posts: 27 Member
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    Yes, I have also been diagnosed with pseudotumor cerebri. Very scary I was told if I lost weight my chances of it clearing up is greater. So i have definityl been on a up hill battle with this weight loss. They also mentioned that it is more common in young women who are heavy.
  • lissavlog
    lissavlog Posts: 55
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    i was diagnosed in 2007. i had severe nausea & vertigo on a daily basis and started losing vision in my right eye. i was on acetazolamide for almost 3 years. they weaned me off & i've been in remission ever since. although my optometrist has noticed changes in my optic nerves again & has been recommending i go back to my neuro-ophthalmologist. but my headaches are now few & far between. and my remission happened before i started losing weight.
  • BlueObsidian
    BlueObsidian Posts: 297 Member
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    Yes, I was diagnosed with it about three years ago. I took acetazolamide for a year (and pretty much hated every day of it, since I had EVERY side effect that medication can cause). I've been off of it since, and working on my weight. It's been a back and forth struggle, but a year in therapy helped me start to manage my binges and emotional connection to food tremendously.

    I think one of the reasons I'm so focused on getting healthy now is that I can feel a difference as I gain weight. I had lost thirty pounds after I was diagnosed, which was a major factor in getting off the medication. However, I gained it back and the headaches start to reappear. It scared me into looking for help dealing with my food and health issues. Even just the 12 pounds I've lost so far makes a noticeable difference in how I feel on a daily basis.
  • MrMax
    MrMax Posts: 73 Member
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    I was just diagnosed with it at the beginning of this month. I started having blurry spots in my vision a couple of months ago and then terrible headaches. I went to the eye doctor about the vision problems and he told me it sounded like PTC. I was sent to a neurologist and had to get an MRI done. I'm now on Diamox and will go back next month to see the doctors. I was already working towards making healthier eating choices but finding out about this diagnosis really kicked my butt in gear.
  • MummyHungry
    MummyHungry Posts: 82 Member
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    I had it back in the 90s. The doctor put me on Lasix and told me to lose a certain amount of weight...once I hit the mark he set, he took me off the Lasix for a month, checked me, and said everything was back to normal. I wish MFP had been around back then...it would have made my part of it a lot easier. ^_^
  • smurfaggie07
    smurfaggie07 Posts: 51
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    bump, any others with Intracranial Hypertension? How have you managed to lose weight?
  • kendrafox
    kendrafox Posts: 111 Member
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    I was diagnosed with it a few years ago when I went in for a routine eye exam. I was on diamox and topomax and am now off of both because I hate what they did to me and how they effected me. I have not been back to either my eye doctor or my neurologist since I moved and I really need to because the migraines are still ever present in my daily life and I want to know if it is still present. It has given me more motivation in the recent months to push forward and to try to get my life on track to a healthy lifestyle.
  • jennaryan1205
    jennaryan1205 Posts: 43 Member
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    I have also been diagnosed with IH. It was three years ago and after numerous lumbar punctures and a pregnancy my headaches went away. I stopped going to the doctor and about a year ago they started back. I have been to several neurologist and an opthamologist since. I am on Diamox, which I hate, it makes me feel like crud. I went to the neourologist and had a LP the other day because I was losing vision in both eyes. He did a horrible job and stuck me about 10 times before he got it right. I have since found a neurosurgeon and I'm trying to get in with him soon. In the meantime, a friend has been helping me do some research and we've found several studies that recommend lowering your intake of fat, sodium, vitamin A, and completley cutting out caffiene to help alleviate IH. Has anyone else heard this? I am so over this condition controlling my life. I have 3 small kids and work full time and live with a constant miserable headache and I'm just done with it!
  • jennaryan1205
    jennaryan1205 Posts: 43 Member
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    I forgot Tyramine, which is found in aged and processed foods. We are still researching, just looking for input from others. :)
  • rubysparkle
    rubysparkle Posts: 362 Member
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    I was diagnosed with this back in 2008, i lost quite a lot of vision, had very painful headaches and was taken to A&E. I was admitted to hospital and given an LP. I was then put on diamox for a year and had about 6 LP's to drain the fluid off my brain. Not nice but I walked and walked until i lost 30lbs and the symptoms got better and the medication could be reduced. It caused me permanent damage to my eyes but i have about 85% of my vision to it doesn't cause me much problems. I have had flare ups on and off but im still under the consultation of a neurologist.

    They tend to focus on weightloss as something that helps it, but my weight has varied and im heavier now than before i was diagnosed, unfortunately gaining it back, but im symptom free, although trying to get the weight off anyway. I found a herbal remedy online - a teaspoon of cider vinegar in a glass of water once a day when i feel my symptoms flaring up and i swear by it. It always seems to go away after about 5 days, each time i've had a flare up i've tried this and it works for me.
  • missalisamel
    missalisamel Posts: 13 Member
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    I have been diagnosed with IIH since Feb 2011.
    I have a Vp shunt (since April 2011). Have had it replaced twice in 2012.
    I am from New Zealand.

    I am so tired of this illness making life so hard.
    Determined to get healthier and take better care of myself.

    Would love to know how you ladies are going now?

    I have lost quite a lot of my vision due to IIH and really need to get my weight down to help prevent any further issues.

    I am just so tired of feeling like crap.
    I feel like crap then eat like crap.
    Then it just continues as this negative spiral.

    So fresh start today.
    Food logged.
    I can do this.
  • Hearts_2015
    Hearts_2015 Posts: 12,031 Member
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    bump
  • peppytwist
    peppytwist Posts: 25 Member
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    I was first diagnosed with PTC/IIH back in 1993 (when I was 11). I have been struggling with it ever since. Luckily there have been years where no medication has been needed, but I continue to get flare ups where LPs and medications are needed to get my symptoms back under control. I have chronic daily headaches from the PTC. I generally try to ignore most of my symptoms but I get scared and seek medical attention when my vision becomes impaired. I think the doctors have prescribed just about every medicine they can think of but unfortunately I seem to get all of the side effects and none of the benefits. I am currently down to just Diamox which I still have just about every listed side effect from. My neurologist is not comfortable with taking me off all medications though since the papilledema is still present. My neurologist does not feel I am a good candidate for a shunt but we have discussed optic nerve fenestration as a possibility if my vision deteriorates. This most recent flare up has been the longest lasting- I have been on medication over two years now. Luckily the symptoms are not as severe as I have had in the past.

    Pretty much every doctor has stressed that I need to lose weight to get my PTC under control. I am not entirely convinced though because although I have been heavy my entire life I have not noticed gaining or losing weight to have had any impact on my flare ups. I have heard people saying that weight loss is not necessarily the answer to PTC and that it is an old school way of thinking. However, I have not seen the research to back that up. I figure that any weight I can lose will make me feel better in other aspects of my life even if it does not help with the PTC. I will certainly never regret losing weight! If by some miracle getting down to a healthy weight does indeed prevent more flare ups I will be ecstatic! After 20 years of PTC I am certainly not holding my breath though...
  • peppytwist
    peppytwist Posts: 25 Member
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    I have also been diagnosed with IH. It was three years ago and after numerous lumbar punctures and a pregnancy my headaches went away. I stopped going to the doctor and about a year ago they started back. I have been to several neurologist and an opthamologist since. I am on Diamox, which I hate, it makes me feel like crud. I went to the neourologist and had a LP the other day because I was losing vision in both eyes. He did a horrible job and stuck me about 10 times before he got it right. I have since found a neurosurgeon and I'm trying to get in with him soon. In the meantime, a friend has been helping me do some research and we've found several studies that recommend lowering your intake of fat, sodium, vitamin A, and completley cutting out caffiene to help alleviate IH. Has anyone else heard this? I am so over this condition controlling my life. I have 3 small kids and work full time and live with a constant miserable headache and I'm just done with it!

    I have experienced many horrible LPs...I won't let them do one without an Xray to guide it now. It is still no fun but at least they have a visualization on where the needle needs to go so no pointless sticks!
  • b00b0084
    b00b0084 Posts: 729 Member
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    I have been taking the Diamox since I was diagnosed and have not had to have another LP. I saw my Dr last back in March and he said the pressure was low enough in my head that I wouldn't have to go see him again unless I started having problems. I am also taking Concerta for ADHD and one of the symptoms of Concerta is head aches. So I have no idea if my constant head aches are from my Concerta of my PTC. Im just scared to call my Dr to go back in because I haven't lose any more than 17 pounds in the past 7 months. I should be doing more but I get too lazy and so tired I just don't feel like moving.
  • easternNCchick
    easternNCchick Posts: 198 Member
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    I work at an eye Dr and have been monitoring my optic nerves myself. Im self pay and cannot afford the diamox nor LPs anymore. Cannot even afford to go to my neurologist. Last year my nerves were very high, I was on meds for 3 months and nerves shrank a lot, enough to where my Dr was getting satisfied with the results. Went off meds in November though due to cost, my nerves got worse and worse. As of April they were worse than my initial diagnosis which were severe enough that I had a hemorrhage in the eye. In May I started here and workout out. I have lost 25lbs since and my optic nerves are within where they were on my meds in October before going off meds. Ears are finally not ringing as much and headaches have subsided a lot. I got a while to go. I will beat this mess with getting healthy.
  • easternNCchick
    easternNCchick Posts: 198 Member
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    completley cutting out caffiene to help alleviate IH. Has anyone else heard this? I

    Yes my bosses have told me this and I have. No caffeine for me since May. Smoking is also a contributing factor Ive been told. Smokeless for 1 year and 2 months
  • b00b0084
    b00b0084 Posts: 729 Member
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    completley cutting out caffiene to help alleviate IH. Has anyone else heard this? I

    Yes my bosses have told me this and I have. No caffeine for me since May. Smoking is also a contributing factor Ive been told. Smokeless for 1 year and 2 months
    I'm still struggling with the no caffeine and no smoking stuff. It's hard to quit smoking when you live with a smoker who smokes inside!
  • starfish0317
    starfish0317 Posts: 5 Member
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    I never drank/used caffeine before and was told after my spinal tap/ epidural blood patch that I NEEDED to drink caffeine, so I have been, after doctors orders. They also suggested I limit my water intake, which sounded ridiculous to me... any thoughts?
  • b00b0084
    b00b0084 Posts: 729 Member
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    I am happy to say that after losing only 15 pounds since my diagnosis I have been taken off of my Diamox! Lets hope with loosing more I will stay in remission the rest of my life.

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