what were your reactions to diamox? i think i may be as well im having strong adverse reactions but the neuroopthamologist said to stay on it to keep the pressure down to preserve my eyesight. i have to see a neurosurgeon soon. everything got really bad after i was upped on my dosage of diamox from 250mg BID to 500mg BID. i cant drive anymore bc i forget where i am going. i am going tohave to leave my job. its ruining my life. i want my life back
(2) all the while wondering if its a brain tumor or a pseudo. and hiding the random blindness is getting harder and its starting to threaten my job. i just wnat to know already! wish i had just gone to my eye dr in the first place because at least i would have known already. being told its either a brain tumor or a pseudo tumor then having to wait 2 weeks is not very good on the nerves. and being told it only happens in obese women ya i didnt think i was obese but thanks lol
Iv been trying to find a dr to believe me that i get really bad headaches and random blindness since august! its ridiculous that after i finally find one and tell him im not leaving til i get a scan that now i have to wait two weeks to get the results, then who knows how long before i can see the dr again to get him to tell me the results. my eye dr said my optic nerve is swollen and if i hadnt gotten a scan yet he would have sent me straight to the hospital. so now i get to sit here and wait(1)
@maryamhosseinighomi I have been doing really shitty. Hence no new IH videos. I haven't felt up to making anything awareness wise and as far as talking to the camera about IH, well there is pretty much no change. I live every day in hellish pain, exhaustion, dizziness and confusion. Even my doctor has no hope I'll ever feel better
@Brittydragon I feel ya, did you notice the confusion starting more after a particular med, lke diamox? this condition sucks. we're all in the same boat, we all feel like all drs are against us or cant/wont help us- well most of us.
@maryamhosseinighomi More it got worse after each surgery. I am up to 8 now. I am allergic to diamox and all the other alternative meds haven't made a difference. So I have only shunts for treatments
Wow ur video is great, I've had ih for 2 years well be ,3 years in November 2012. I've been thru hell and back so no how u feel. U shud check out my video :)
Lens Crafters also found my PTC ( IH). It was somewhat of a relief to be told that there was a reason why my sight kept blinking out and why I always had noise in my head and such very bad headaches. I got tired of my Dr. telling me that there was no way that I could be hearing my own heart beat and whooshing in my head all of the time. To ExImperialDragon I also have had kidney stones due to the Diamox. I have had them 3 times in 1 year but the diamox helps so I stay on it. Good video.
@spanisheyesri yikes. Scary about the Kidney stones. I cna't even try Diamox because it makes my airway close. Sometimes it sucks having the wealth of allergies I do. I wish there was a treatment without all these nasty side effects.
I am really grateful to lens crafters and when I went back for a copy of the pictures and the report for my visit they were really excited to find out was wrong with me and everything. It was so sweet. Sometimes I feel like doctors are idiots. tinnitus anyone???
@Brittydragon I do not think that they are so much idiots as they do not always listen to the patient enough. It is our body and we know when something is different and wrong.
@spanisheyesri Some don't listen. I've also heard of doctors who feel like they know everything and won't listen to contradicting information. But I have had doctors I want to strangle. I was in the ER for a horrible amount of time one, the video is on this channel titled ER Hell. My symptoms were so bad I said I wished I was dead. I was in so much pain and they refused to tap my shunt. They wouldn't even give me a spinal tap. All because my doctor was on vacation. Times like that I think IDIOTS
@Brittydragon I agree with you on that score. They are there for when you can't get to your Dr. in an emergency situation. It was like that for me with my first bout with the kidney stones. I almost put my hand thru a window because I was in so much pain that I lashed out and that is what I hit. They told me that they would be in soon to take an x ray to see what was going on. They sometimes just do not get it. I have great empathy for what you went through.
I cried watching this because going through this condition is so horrible and no one else can understand unless they have been through it. I am lucky that i was diagnosed just as my vision started rapidly worsening and now my right eye is better...unfortunately my left eye is not. I still have the papiledema (started acetemolomide in april) I spent the first few months of suffering being told that it was just stress despite having a high csf pressure reading. I hope a cure can be found!
@Brittydragon It is terrible what all of us go through with this disease and is quite frustrating just getting the headaches under control and now living with the fear that it'll strike back with a vengeance. But you have to keep looking on the positive side...it could still be worse and that (as well as friends and family) is what helps me get through this.
am glad am not alone. after a long time with the major headaches they final found out i had pseduotumor cerebri. at first i was just told it was all in my head and no one would believe me but am glad they caught it in time before i could ever lose my vision.
@BRISCO6978 I am so glad they were able to keep you from losing your vision. Going blind is a terrifying thing. There are a lot more of us out here than the doctors realize. Hopefully if we raise enough awareness then we can get the understanding we deserve.
@lovienthurston in my case the doctors tried medicine but I was allergic to it. Due to the rapid loss of my vision they gave me shunt immedietely. I am not aware of whether drs ever check veins with pseudotumor. The most common is medication and shunt although niether is fool proof. It has been over a year since my first shunt was put in and since then I have had 2 revisions one of which was a total replacement because of an infection that spread to my brain, I am already sick again.
@victoria1026 I understand how scary the news can be. Sometimes it seems like being diagnosed with this is a can of worms to endless questions and few answers. I hope that once you begin treatment you will start to feel better. *hugs* you are not alone.
@Brittydragon If I could count how many times I've heard "it's all in your head," I'd have counted into eternity. Luckily I found a specialist and go in for a spinal tap soon.
@audreylynnshepherd I had years of doctors treating me like an overdramatic kid. After awhile I felt like maybe they were right and I was just being a wuss.
i have a combination of this & a migraine disorder so rare that there is no standard treatment. i get a migraine EVERY SINGLE DAY that doesn't respond to anything other than being put under.
johns hopkins specialists treating me say i'm LITERALLY 1 in 10 million!
I was diagnosed with psuedotumor cerebri and the doctors put LP shunt in the shunt failed 2 times and I had to go back into surgery and I've been dealing with this problem now for 4 years I still get migraines. My symptoms are also mental issues and lots of pain in my back. The doctors I was seeing was not helpful and all they do is put me on topamax to control the headaches.
@SuperSherry89 I am sorry to hear that you have been through such struggles. It is difficult having a disease that people know so little about. I wish we knew the answers. Sometimes life can feel pretty hopeless. It's like everytime you dare to dream the rug gets pulled out from under you and you fall back down to the ground. It gets old really fast. I hope that things become stable for you soon.
I suffer from the same condition. It is absolutely dyer. The doctors think you are crazy so many times until they compare your vision tests year. I feel your pain honestly and truly. I am scheduled for a shunt surgery this month. I was declining badly and then bottomed out and i've picked back up to now being tunnel vision. It's scary. I thank you for putting it out there because no one really knows about or understands just how vicious the disease is
I also have IH, so I know what you guys are going through. Kudos to Brittydragon on the amazing video. You did an awesome job of explaining everything. Are you on facebook? And are you already one of my friends? I'm being treated at the main Kaiser hospital in Sacramento, but I'm from Modesto, so it's not too often that we find others close!!!!
@dontyouwish209 It is crazy to find people so close. I have an e-mail pen pal with psuedotumor. Turns out we have the same brain surgeon. It is crazy how small the world can be sometimes. Glad you enjoyed the video. I hope it helps your friends and family understand what you go through.
Don't get me wrong am not mad at you if that what you think... But remember we don't loose the vision we loose the sight. I'm just dissapointed because they gave me for a lost case and greatfully I never felt apart and now am part of the NFB (National Federation of the Blind)) and trust me this is just a bump in my path.
I didn't think you were mad. If I came off bitchy I am sorry.
I got the it's all in your head excuse all the way through high school. So by the time it was truly important to listen to me body because my vison was going out I went 3 months before seeing a doctor about it because I thought it really was all in my head, I was days away from going blind myself and just that hint of it terrifies me. But I do a lot of video editing and photography. In fact I was in film school when this happened.
It happened to me too. The doctors never found anything and they gave the nerve to tell me that it was all in my head. I get blind in 2008 because of this. Good for you that din't lose anything.But am doing great...
It is no easy fight with pseudotumor for anyone. I am sorry to hear about your vision. I wish there was a way to put the doctors in our bodies sometimes. Why they can't believe us is beyond me.
Thank u for posting this.. I dont feel so alone anymore... I am going through sooooo much with this ptc.. i havent had surgey ..yet.. only becuz they wont decide on if its the right thing to do.. I go for my 6th LP next week.. How much suffering do I have to endure??.. this is the worst:(.. Im happy that u pulled through!
I'm not so good. My shunt is broken and i'll need new surgery. My doctors don't know what to do because i had so much surgery before. Ad this moment i need one ore two spinal taps a week. I'ts killing me and i'm feeling a little depressed.
I'm sorry to hear that. I can't imagine having weekly spinal taps nevermind 2 a week. I hope the doctors decide how to help you soon. Sometimes I wonder if they understand just how hard and dangerous spinal taps are for us. I hope you shunt gets fixed or replaced soon. *hugs* you are a magnificent person for bearing troubles most people couuld never imagine.
I have it too. For me they tell me to lose my weight, which is hard for me. How I got diganosed was my left eye had turned in, I went to the emergency room they did a LP and my pressure was so high that it shot through the tubes. I had to endure 14 spinal taps before they decided to put a shunt in. I only had to have it replaced once. Since then I have to be very careful not to get hit in the head. Also I have to try not to get sick, cause the infections could cause problems with the shunt.
lol. I know how you feel. My latest problems with IH have been sever abdominal pain in which my shunt seems to be playing an unknown role. In the past month I've been prescribed 5 different types of pain killers, an antiinflamtory, and 3 types of meds for nausea. My bathroom looks like a freaking pharmecy. Sometimes I wonder if the doctors think all I want is meds. I keep teling them forget the pain meds give me a freaking diagnosis and treat the problem not just the pain.
Thank you for posting that video. I also have BIH and also am being treated at UC Davis. They are great!!! I wanted to commend you on the positive attitude you reflected in your video. This condition is so frustrating and it seems that every forum you go to is full of negativity. I love the way "Abutterfly" above says that each of us carries a piece of the cross. We bare the burden together!! Be well. :)
Thank you. I am always happy to see other people who are touched by my story. Fell free to share this with your friends and familiy if it helps to explain to them what you are going through. In the words of High School Musical "We're all in this Together"
I too feel your pain...I was told I the same thing 2 years ago...I was a week away from being perminately blind...I see a specialist, had spinal taps and was on medication...I'm currently on my way to remission! I hope you are doing well! I'm glad i watched your video...it made me feel not so alone, it's hard when people don't understand what you are going through! I wish you the best!
Thank you so much for your support. I am glad to put my voice out in support of other people. When you get that news it is very shocking and you are litteraly in the dark about everything. I remember when I got diagnosed everything happened so fast that I couldn't absorb all that I was being told. If I can help people find a light in that darkness it is the least I can do. Keep on fighting.
thanks so much. I had to make something for class in order to pass it and I felt that explaing my disease was a good way of educating people while doing my homework.
im getting all these tests done and i have an appointment in three weeks for a nerologist so i can get an MRI done, i dont think im goin to be able to wait that long in agony and pain . my eye doctor and my doctor are pretty sure its pseudotumor cerebri . i havent been to school for 2 weeks straight . my migraine is just one continuous one and its so hard to handle . . i just wanna cry sometimes . .
It is hard to live with this pain, this invisible force that drags us down. Other people find it hard to understand the things that we go through. There are days when my pain is so bad that I can't form sentances straight or focus to drive. It's hard not to feel weak or like you are using excuses when no one can find proof of what causes your pain. I hope that you find your blessing, In the meantime know you're not alone. Although we are all miles apart, we fight the same battle.
I just want to say I know EXACTLY what you went through. I too have Pseudotumor Cerebri...I was diagnosed by Shopko's optomatrist. In May of 2008 I am so thankful that I can see again. He said if I wouldn't have come in when I did I could have been permenently blind, paralyzed or dead within 2 weeks. I had to get a VP shunt placed in my head. I had so much fluid in my spine that it actually bubbled out over the tube. I wish you the best of luck in your recovery.
Excellent video! You did such a good job explaining everything and what it's like. And I like the happy ending, and the mohawk! It's good to find community when we are such a small group and say "me too" , but this makes it easier to explain to others. My friends and family on facebook can see someone say "me too." Thanks!
I got sick again. Was there for the first week and part of the second week when my headaches came back and I haven't been able to function normally. So no I haven't been at school even though I'm suppossed to be there this quarter.
I liked the video and I wish more people could see it. I have PTC also. I was diagnosed in 2006. Had a vp shunt put in and 6 months later had to have it replaced. This disease is hard to deal with. There are days I wish I wasn't here anymore because of the pain and side affects from this disease. Thank you for the video it was nice to know I am not alone in this battle.
Hi well I also have IH. I hope you are having a good day. wish you the best and know your not alone. Eachone of us with IH cary a piece of the cross. with support we can make each day a better day.
what were your reactions to diamox? i think i may be as well im having strong adverse reactions but the neuroopthamologist said to stay on it to keep the pressure down to preserve my eyesight. i have to see a neurosurgeon soon. everything got really bad after i was upped on my dosage of diamox from 250mg BID to 500mg BID. i cant drive anymore bc i forget where i am going. i am going tohave to leave my job. its ruining my life. i want my life back
maryamhosseinighomi 2 weeks ago
@maryamhosseinighomi Hives and my airway swelled. I am allergic to it because I am allergic to Sulfa drugs
Brittydragon 2 weeks ago
(2) all the while wondering if its a brain tumor or a pseudo. and hiding the random blindness is getting harder and its starting to threaten my job. i just wnat to know already! wish i had just gone to my eye dr in the first place because at least i would have known already. being told its either a brain tumor or a pseudo tumor then having to wait 2 weeks is not very good on the nerves. and being told it only happens in obese women ya i didnt think i was obese but thanks lol
angeltoashs 3 weeks ago
Iv been trying to find a dr to believe me that i get really bad headaches and random blindness since august! its ridiculous that after i finally find one and tell him im not leaving til i get a scan that now i have to wait two weeks to get the results, then who knows how long before i can see the dr again to get him to tell me the results. my eye dr said my optic nerve is swollen and if i hadnt gotten a scan yet he would have sent me straight to the hospital. so now i get to sit here and wait(1)
angeltoashs 3 weeks ago
how are you doing now? are you ok?
maryamhosseinighomi 3 weeks ago
@maryamhosseinighomi I have been doing really shitty. Hence no new IH videos. I haven't felt up to making anything awareness wise and as far as talking to the camera about IH, well there is pretty much no change. I live every day in hellish pain, exhaustion, dizziness and confusion. Even my doctor has no hope I'll ever feel better
Brittydragon 3 weeks ago
@Brittydragon I feel ya, did you notice the confusion starting more after a particular med, lke diamox? this condition sucks. we're all in the same boat, we all feel like all drs are against us or cant/wont help us- well most of us.
maryamhosseinighomi 2 weeks ago
@maryamhosseinighomi More it got worse after each surgery. I am up to 8 now. I am allergic to diamox and all the other alternative meds haven't made a difference. So I have only shunts for treatments
Brittydragon 2 weeks ago
Wow ur video is great, I've had ih for 2 years well be ,3 years in November 2012. I've been thru hell and back so no how u feel. U shud check out my video :)
ThePrincessnikki86 2 months ago
Lens Crafters also found my PTC ( IH). It was somewhat of a relief to be told that there was a reason why my sight kept blinking out and why I always had noise in my head and such very bad headaches. I got tired of my Dr. telling me that there was no way that I could be hearing my own heart beat and whooshing in my head all of the time. To ExImperialDragon I also have had kidney stones due to the Diamox. I have had them 3 times in 1 year but the diamox helps so I stay on it. Good video.
spanisheyesri 7 months ago
@spanisheyesri yikes. Scary about the Kidney stones. I cna't even try Diamox because it makes my airway close. Sometimes it sucks having the wealth of allergies I do. I wish there was a treatment without all these nasty side effects.
I am really grateful to lens crafters and when I went back for a copy of the pictures and the report for my visit they were really excited to find out was wrong with me and everything. It was so sweet. Sometimes I feel like doctors are idiots. tinnitus anyone???
Brittydragon 7 months ago
@Brittydragon I do not think that they are so much idiots as they do not always listen to the patient enough. It is our body and we know when something is different and wrong.
spanisheyesri 7 months ago
@spanisheyesri Some don't listen. I've also heard of doctors who feel like they know everything and won't listen to contradicting information. But I have had doctors I want to strangle. I was in the ER for a horrible amount of time one, the video is on this channel titled ER Hell. My symptoms were so bad I said I wished I was dead. I was in so much pain and they refused to tap my shunt. They wouldn't even give me a spinal tap. All because my doctor was on vacation. Times like that I think IDIOTS
Brittydragon 7 months ago
@Brittydragon I agree with you on that score. They are there for when you can't get to your Dr. in an emergency situation. It was like that for me with my first bout with the kidney stones. I almost put my hand thru a window because I was in so much pain that I lashed out and that is what I hit. They told me that they would be in soon to take an x ray to see what was going on. They sometimes just do not get it. I have great empathy for what you went through.
spanisheyesri 7 months ago
I cried watching this because going through this condition is so horrible and no one else can understand unless they have been through it. I am lucky that i was diagnosed just as my vision started rapidly worsening and now my right eye is better...unfortunately my left eye is not. I still have the papiledema (started acetemolomide in april) I spent the first few months of suffering being told that it was just stress despite having a high csf pressure reading. I hope a cure can be found!
vampirebabe2009 7 months ago
@vampirebabe2009 Sorry to hear how much you have gone through. It is horrible what we have to face due to this horrid disease.
Brittydragon 7 months ago
@Brittydragon It is terrible what all of us go through with this disease and is quite frustrating just getting the headaches under control and now living with the fear that it'll strike back with a vengeance. But you have to keep looking on the positive side...it could still be worse and that (as well as friends and family) is what helps me get through this.
vampirebabe2009 7 months ago
ah, sorry, Topomax. i got the LP shunt in March, and now im wondering if theres sopmething wrong, i started to see traces again...
ExImperialDragon 10 months ago
I have PTC. I was diagnosed in November. They put me on Diomox (which gave me awful kidney stones) anf
ExImperialDragon 10 months ago
@ExImperialDragon I'd say if you are worried go to your neurologist. IH symptoms can dissappear for awhile onlly to come back with a vengence.
Brittydragon 10 months ago
am glad am not alone. after a long time with the major headaches they final found out i had pseduotumor cerebri. at first i was just told it was all in my head and no one would believe me but am glad they caught it in time before i could ever lose my vision.
BRISCO6978 1 year ago
@BRISCO6978 I am so glad they were able to keep you from losing your vision. Going blind is a terrifying thing. There are a lot more of us out here than the doctors realize. Hopefully if we raise enough awareness then we can get the understanding we deserve.
Brittydragon 1 year ago
@lovienthurston in my case the doctors tried medicine but I was allergic to it. Due to the rapid loss of my vision they gave me shunt immedietely. I am not aware of whether drs ever check veins with pseudotumor. The most common is medication and shunt although niether is fool proof. It has been over a year since my first shunt was put in and since then I have had 2 revisions one of which was a total replacement because of an infection that spread to my brain, I am already sick again.
Brittydragon 1 year ago
I was just diagnosed with this yesterday...after two years of constant migraines...I thought I was going insane...until yesterday. I'm terrified.
victoria1026 1 year ago
@victoria1026 I understand how scary the news can be. Sometimes it seems like being diagnosed with this is a can of worms to endless questions and few answers. I hope that once you begin treatment you will start to feel better. *hugs* you are not alone.
Brittydragon 1 year ago
@sof2finchy I am so sorry. It becomes very frustrating that people can't understand just how much our symptoms affect our abilities
Brittydragon 1 year ago
@Brittydragon If I could count how many times I've heard "it's all in your head," I'd have counted into eternity. Luckily I found a specialist and go in for a spinal tap soon.
audreylynnshepherd 1 year ago
@audreylynnshepherd I had years of doctors treating me like an overdramatic kid. After awhile I felt like maybe they were right and I was just being a wuss.
I hope that you find some answers.
Brittydragon 1 year ago
i have a combination of this & a migraine disorder so rare that there is no standard treatment. i get a migraine EVERY SINGLE DAY that doesn't respond to anything other than being put under.
johns hopkins specialists treating me say i'm LITERALLY 1 in 10 million!
yet somehow i don't feel too special...
sprinklefriend 1 year ago
I was diagnosed with psuedotumor cerebri and the doctors put LP shunt in the shunt failed 2 times and I had to go back into surgery and I've been dealing with this problem now for 4 years I still get migraines. My symptoms are also mental issues and lots of pain in my back. The doctors I was seeing was not helpful and all they do is put me on topamax to control the headaches.
SuperSherry89 1 year ago
@SuperSherry89 I am sorry to hear that you have been through such struggles. It is difficult having a disease that people know so little about. I wish we knew the answers. Sometimes life can feel pretty hopeless. It's like everytime you dare to dream the rug gets pulled out from under you and you fall back down to the ground. It gets old really fast. I hope that things become stable for you soon.
Brittydragon 1 year ago
I suffer from the same condition. It is absolutely dyer. The doctors think you are crazy so many times until they compare your vision tests year. I feel your pain honestly and truly. I am scheduled for a shunt surgery this month. I was declining badly and then bottomed out and i've picked back up to now being tunnel vision. It's scary. I thank you for putting it out there because no one really knows about or understands just how vicious the disease is
livrochelle 1 year ago
@livrochelle I am glad that you enjoyed it. Sometimes the best way to help people understand is to show them. I hope you heal from surgery quickly.
Brittydragon 1 year ago
I also have IH, so I know what you guys are going through. Kudos to Brittydragon on the amazing video. You did an awesome job of explaining everything. Are you on facebook? And are you already one of my friends? I'm being treated at the main Kaiser hospital in Sacramento, but I'm from Modesto, so it's not too often that we find others close!!!!
dontyouwish209 1 year ago
@dontyouwish209 It is crazy to find people so close. I have an e-mail pen pal with psuedotumor. Turns out we have the same brain surgeon. It is crazy how small the world can be sometimes. Glad you enjoyed the video. I hope it helps your friends and family understand what you go through.
Brittydragon 1 year ago
Don't get me wrong am not mad at you if that what you think... But remember we don't loose the vision we loose the sight. I'm just dissapointed because they gave me for a lost case and greatfully I never felt apart and now am part of the NFB (National Federation of the Blind)) and trust me this is just a bump in my path.
Curlywings 2 years ago
I didn't think you were mad. If I came off bitchy I am sorry.
I got the it's all in your head excuse all the way through high school. So by the time it was truly important to listen to me body because my vison was going out I went 3 months before seeing a doctor about it because I thought it really was all in my head, I was days away from going blind myself and just that hint of it terrifies me. But I do a lot of video editing and photography. In fact I was in film school when this happened.
Brittydragon 2 years ago
It happened to me too. The doctors never found anything and they gave the nerve to tell me that it was all in my head. I get blind in 2008 because of this. Good for you that din't lose anything.But am doing great...
Curlywings 2 years ago
It is no easy fight with pseudotumor for anyone. I am sorry to hear about your vision. I wish there was a way to put the doctors in our bodies sometimes. Why they can't believe us is beyond me.
Brittydragon 2 years ago
Thank u for posting this.. I dont feel so alone anymore... I am going through sooooo much with this ptc.. i havent had surgey ..yet.. only becuz they wont decide on if its the right thing to do.. I go for my 6th LP next week.. How much suffering do I have to endure??.. this is the worst:(.. Im happy that u pulled through!
CaramelAquarius27 2 years ago
From one PTC sufferer to another... God Bless you. Thank you for posting this!
rachellarea1 2 years ago
Hey brittydragon,
How are you today?
I'm not so good. My shunt is broken and i'll need new surgery. My doctors don't know what to do because i had so much surgery before. Ad this moment i need one ore two spinal taps a week. I'ts killing me and i'm feeling a little depressed.
wendytje1983 2 years ago
I'm sorry to hear that. I can't imagine having weekly spinal taps nevermind 2 a week. I hope the doctors decide how to help you soon. Sometimes I wonder if they understand just how hard and dangerous spinal taps are for us. I hope you shunt gets fixed or replaced soon. *hugs* you are a magnificent person for bearing troubles most people couuld never imagine.
Brittydragon 2 years ago
I have it too. For me they tell me to lose my weight, which is hard for me. How I got diganosed was my left eye had turned in, I went to the emergency room they did a LP and my pressure was so high that it shot through the tubes. I had to endure 14 spinal taps before they decided to put a shunt in. I only had to have it replaced once. Since then I have to be very careful not to get hit in the head. Also I have to try not to get sick, cause the infections could cause problems with the shunt.
bethany17 2 years ago
@bethany17 Oh my goodness. 14 Spinal Taps!? I shudder at the thought. You are a very strong person.
Brittydragon 2 years ago
that I'am. I also have to take pills which ughh I hate taking pills, I feel like a druggie asking for more drugs sometimes!!! LOL!!!!
bethany17 2 years ago
lol. I know how you feel. My latest problems with IH have been sever abdominal pain in which my shunt seems to be playing an unknown role. In the past month I've been prescribed 5 different types of pain killers, an antiinflamtory, and 3 types of meds for nausea. My bathroom looks like a freaking pharmecy. Sometimes I wonder if the doctors think all I want is meds. I keep teling them forget the pain meds give me a freaking diagnosis and treat the problem not just the pain.
Brittydragon 2 years ago
Hi my name is wendy and i'm from the netherlands. I've also ptc. I've had 9 sergerice in three years. I'ts really hard.
Thank you for youre story, I hope you're doing fine now.
wendytje1983 2 years ago
wow 9 surgeries. You must be very strong. Keep fighting.
Brittydragon 2 years ago
Thank you for posting that video. I also have BIH and also am being treated at UC Davis. They are great!!! I wanted to commend you on the positive attitude you reflected in your video. This condition is so frustrating and it seems that every forum you go to is full of negativity. I love the way "Abutterfly" above says that each of us carries a piece of the cross. We bare the burden together!! Be well. :)
cricketspups 2 years ago
Thank you. I am always happy to see other people who are touched by my story. Fell free to share this with your friends and familiy if it helps to explain to them what you are going through. In the words of High School Musical "We're all in this Together"
Brittydragon 2 years ago
I too feel your pain...I was told I the same thing 2 years ago...I was a week away from being perminately blind...I see a specialist, had spinal taps and was on medication...I'm currently on my way to remission! I hope you are doing well! I'm glad i watched your video...it made me feel not so alone, it's hard when people don't understand what you are going through! I wish you the best!
Braylon24mommy 2 years ago
Thank you so much for your support. I am glad to put my voice out in support of other people. When you get that news it is very shocking and you are litteraly in the dark about everything. I remember when I got diagnosed everything happened so fast that I couldn't absorb all that I was being told. If I can help people find a light in that darkness it is the least I can do. Keep on fighting.
Brittydragon 2 years ago
excellent video. your very eloquent when you speak and im glad that things worked out for you.
Gillsaurus 2 years ago
thanks so much. I had to make something for class in order to pass it and I felt that explaing my disease was a good way of educating people while doing my homework.
Brittydragon 2 years ago
i did the same thing with an essay i needed to write for an english class. just i wrote about something else not psuedotumors
Gillsaurus 2 years ago
im getting all these tests done and i have an appointment in three weeks for a nerologist so i can get an MRI done, i dont think im goin to be able to wait that long in agony and pain . my eye doctor and my doctor are pretty sure its pseudotumor cerebri . i havent been to school for 2 weeks straight . my migraine is just one continuous one and its so hard to handle . . i just wanna cry sometimes . .
TheHaileyBart 2 years ago
It is hard to live with this pain, this invisible force that drags us down. Other people find it hard to understand the things that we go through. There are days when my pain is so bad that I can't form sentances straight or focus to drive. It's hard not to feel weak or like you are using excuses when no one can find proof of what causes your pain. I hope that you find your blessing, In the meantime know you're not alone. Although we are all miles apart, we fight the same battle.
Brittydragon 2 years ago
I just want to say I know EXACTLY what you went through. I too have Pseudotumor Cerebri...I was diagnosed by Shopko's optomatrist. In May of 2008 I am so thankful that I can see again. He said if I wouldn't have come in when I did I could have been permenently blind, paralyzed or dead within 2 weeks. I had to get a VP shunt placed in my head. I had so much fluid in my spine that it actually bubbled out over the tube. I wish you the best of luck in your recovery.
tealgurl14 2 years ago
Thank you. It is so encouraging and heartwarming to know I am not alone. May you stay strong and healthy as you face your own battle.
Brittydragon 2 years ago
Excellent video! You did such a good job explaining everything and what it's like. And I like the happy ending, and the mohawk! It's good to find community when we are such a small group and say "me too" , but this makes it easier to explain to others. My friends and family on facebook can see someone say "me too." Thanks!
baxification 2 years ago
Glad to have helped. Keep on fighting :)
Brittydragon 2 years ago
I got sick again. Was there for the first week and part of the second week when my headaches came back and I haven't been able to function normally. So no I haven't been at school even though I'm suppossed to be there this quarter.
Brittydragon 2 years ago
I liked the video and I wish more people could see it. I have PTC also. I was diagnosed in 2006. Had a vp shunt put in and 6 months later had to have it replaced. This disease is hard to deal with. There are days I wish I wasn't here anymore because of the pain and side affects from this disease. Thank you for the video it was nice to know I am not alone in this battle.
jburger1980 2 years ago
I'm glad that you enjoyed it. It makes it easier to explain things to my family when they ask about my disease.
Brittydragon 2 years ago
Hi well I also have IH. I hope you are having a good day. wish you the best and know your not alone. Eachone of us with IH cary a piece of the cross. with support we can make each day a better day.
Abutterfly381 2 years ago
Thanks for the support it's nice to know I'm not alone.
Brittydragon 2 years ago
That just made me cry :(
travis2311 2 years ago
It's not supposed to make you cry. Just talk about the excitement I went through last quarter. Sorry Lily.
Brittydragon 2 years ago
never said you had to watch it again :)
Brittydragon 2 years ago
I've seen this before. You just like to make me feel sad. :(
lunalovegood666 2 years ago