I also have this condition. No matter how much others want to understand how I am feeling unless they have it also they have no clue. I'm tired of doctor's acting like it is my weight. Yes right this minute I am over weight. BUT I have had it at a normal healthy weight too. All the different meds they have had me on did nothing but make me gain weight and put me in the bed. I am now thinking of getting the shunt but this scares the crap out of me....The worse thing about IH is feeling alone :O(
My son was 14 when he was diagnosed with IH. Dori was a huge support for him and I think God for her and Robbie. And my son was very active and athletic and in no way overweight when he was diagnose. And there was no cause for it.
Every time I'm feeling bad I listen to this and watch the video. It gives me hope and inspiration and comforts me to know I am not alone. Thank you Dori and Robbie (and Tim) for this fabulous video and song. Many days I would not have made it through without it.
This video has helped many people, as well as myself who have IH, realize that we are not alone. The sad thing is there is always someone who has this condition worse than others. There are also people who have more than one condition/disease along with IH. Instead of bashing other people, we should be banning together for support. I pray that people see the damage they are causing by spreading the hate.
Thank you to everyone who has supported this video and continues to help those with IH.
Dori (Robbie's mom) has done so much to raise awareness of IH and money to help find a cure that it's despicable that anyone could think her intent was in the least way self-serving or caused other IH patients to feel badly.
Even tho Robbie is now doing well and has been for a while Dori continues to fight tirelessly for those of us who have IH to find a cure and have more resources to make that happen.
This video has also helped many of my family and friends understand what I'm dealing with.
I'm deeply saddened and amazed by some of the comments I've seen posted here recently. This video, song and Robbie's story are certainly NOT about self-pity and make no one feel alone, scared if they truly have this disorder.
When I was diagnosed this was the first thing I found online regarding IH and it helped me immensely to know I was NOT alone...that there are others out there who have it. I was able to connect with quite a few other IH'ers via their posts and have made awesome friends.
@Tehbazil and @funkfise it is sad to see people doing nothing but attacking someone who is working so hard to help others. Creating a video to raise awareness is not about self pity. We do not wallow in what IH has taken from us. Instead, we use it to become stronger. I am sorry for whatever happened to you to make you feel that you need to attack others, but your posts are not about trying to establish intelligent debate.
THANK YOU to Dori and all my friends who work so hard to raise awareness.
i have had several shunts, and do not have ih due to being overweight. when i was diagnosed i was thin, healthy and very active. shunts fail more than they work. i hope that you don't have to deal with what many of us have dealt with.
the ih community has helped me and many others deal with living the day to day that comes with chronic ih.
thank you dori for being one of our champions, don't let the comments of these two people change you. thank you for fighting for us.
cont'd I know as I have many friends who have undergone yrs and yrs and yrs of repeated surgeries coz their only option is shunts as the meds don't work. Shunts ARE NOT the magic answer to IH! These people are NOT all overweight women, they are men, women and children of all ages - many of whom are of average weight. You say that we revel in our own ignorance... interesting! You are the one quoting out of date knowledge of IH! People like you are the exact reason we need more awareness
cont'd "It already has an effective treatment, the shunt." YET AGAIN WRONG!!!!!
The shunt may have worked for you so far and I hope for your sake that you're one of the very very few for whom the shunt works for a long time..however your ignornace of IH is quite frankly laughable! Shunts constantly need adjusting, get infected, get blocked, stop working, and need replacing.
cont'd " But it is a syndrome, it has a cause, almost certainly for all of you it is weight-related, you can't expect the IHRF to fix that." AGAIN - WRONG!!!! IT'S THESE KIND OF ANCIENT ASSUMPTIONS THAT RESEARCH IS PROVING TO BE WRONG!! IT'S THIS KIND OF ATTITUDE WE ARE FIGHTING! It can affect ANYONE, ANY AGE, ANY RACE, ANY WEIGHT!!!!
My husband has never been overweight! Oh yes and he is also male ...next you'll be rolling out the other ancient idea that only overweight women get IH!
@pris72 I'm sorry if you thought that i was saying that only overweight women get IH...I wasn't.
I was responding to someone who had been making comments stating that only overweight people get IH... I know that this isn't true! It is an ancient myth regarding IH.
IH can affect anyone, any age, any weight. Indeed my husband who has had chronic IH for many yrs now has never been overweighht and he is male! Sorry for any misunderstanding regarding my comments.
@vickiTauthor I am 5'7'' and weigh 128 and have IH. When I first started experiencing pain my boyfriend suggested maybe I needed glasses. An opthamologist noted papilllidema in both eyes following an eye exam (my vision was perfect btw). He had me come back in a month later to take another look, my optical nerve was still swollen.This doctor ignored it because I didn't "fit the demographic". If he didn't ignore that major symptom, which should have been taken seriously considering it's used
@mooshmoosh13 as diagnostic criteria, I wouldn't have to had dealt with such severe pain for a year. I went to countless doctors and everyone ignored me. All because of their preconceived ideas regarding the demographics of those with IH. Talk about f-ing bullshit
"You seem to have misunderstood my point. You could be living a life of interesting hobbies rather than obssessing about an illness." - ~We DO have a life full of other things other than IH awareness!!!! "Doctors understand and treat it." Ermm....NO THEY DON'T!!!!! SO MANY DRS DON'T UNDERSTAND IT AND DON'T TREAT IT PROPERLY!
All you have succeded in doing is prove to me that many of you are MORE pathetically self-pitying than I imagined, in my analogy, you are the drug-addicts. However, seeing as how analogies and any intelligent points seem to be too much for you to understand, I won't make the effort needed to refute any of your laughable(!) comments and instead just make you all aware that not a single one of you had succeded in responding to what I have actually said. That. Is almost as pathetic as this video.
Indeed you have shown me to be a horrible person with all your messages full of hate and namecalling, you are indeed my moral superiors. Well done. I came here hoping to get some sort of intelligent debate on the topic and all I got was a gang of people not only unable to write legibly but unable to properly respond to any of my points. Instead choosing to revel in their own ignorance spouting catchphrases and insults and irrelivant points that have nothing to do with what I have said.
Anyway, nobody here is willing to even consider my points in the first place, which is a real shame because I'd actually be really happy if somebody realised that watching videos about an illness isn't as healthy as adjusting to it and trying to find something else to be happy about. I won't be checking the responses or responding again on here, as nobody is willing to consider an actual rational discussion. Please, just someone realise we have a point and don't spend your life talking about IH.
@funkifise the video helps people adjust,glad your not returning as all you do is talk out of your backsides.you even have to like your own comments,we may have a brain condition but unlike you we aint thick!!!!!!!!!!!!!
You seem to have misunderstood my point. You could be living a life of interesting hobbies rather than obssessing about an illness. Doctors understand and treat it. But it is a syndrome, it has a cause, almost certainly for all of you it is weight-related, you can't expect the IHRF to fix that. It already has an effective treatmen, the shunt. And the only way to prevent it in the first place is to lose weight. Awareness won't change that, neither will the IHRF. Only you can change your future.
@funkifise how as usa size 8/10 is it obese???? you really dont have a clue and i still believe you as a fake TOTALLY.your the one obsessed coming here hurting good people,the rest of us get on with life as best we can.if you and your hubby had a brain cell between you ud see the video is to raise awareness for a cure for you,yes you and all of us.oh and if your hubby knew anything we dont spell proper cos most of us is blind,shows how much he knows!!!!!!!!!!!!!!!!
@funkifise shunts dont always work,i and hundreds others know this and its nothing to do with weight,may be for you but certanly isnt for me!!!!!!! im a thin iher u mong!!!!!!!!!!!!
Dori came to visit us personally after my daughter was diagnosed with IH and it meant so much to me. Carly suffered through a year of repeated hospitalizations and the accompanying trauma of it all, but after brain surgery for a partially collapsed vein in her head, she is headache free now. I applaud Dori's valiant effort to bring awareness to this debilatating disease, and am appalled at any criticism of this video.
@Tahbazil and @funkifise If you consider yourselves to be so happy then why do you feel the need to attack someone who is doing nothing but good?
We are positive people and our lives ARE worth living!! However when someone blatently attacks a champion of the cause who has devoted so much of her life to helping others then you will see us defend her! and as for being positive - Dori is one of the most positive people on the planet! Get ur facts straight before you attack!
@Tahbazil and @funkifise then that is up to you, but don't slag off those (inc myself) who have chosen to devote their time to really making a difference!
Whether you personally believe that these videos help or not quite frankly is irrelevant because it has been proven that THEY DO HELP!!!! During IH awareness mth 2010 the IH brain pain team raised over $1000 for IH research. How much did you raise? Videos such as this one helped people to understand more about IH and help raise awareness.
@Tahbazil and @funkifise You say that we are not positive... we are positive and we are focused on raising awareness of IH andsupporting the work of the IHRF. The vast majority of IH patients I know are strong, positive people, trying to make the most of each new day. You do not know us personally so how can you judge us?These vdeos are made to raise awareness, not to say 'woe is me 24/7' I repeat to raise awareness!!! to help more people understand. If you choose to not talk about ur IH cont'd
@Tahbazil & @funkifise---i've had IH for 3 years and i'm one of the lucky ones...i'm in a controlled remission now. i look on the brighter side of things daily...i know i've survived worse. you are both disgusting people! Dori and this video, and the rest of us that are yelling at you have raised more money for research than most people will ever see, and we share our stories to raise awareness. none of us seek pity. you need to get your story straight before you start yelling at people!!!
@Tahbazil, I am basically speechless. I will pray for you and your wife, as I do not want to say something in anger I may regret! I pray your wife is as pain-free as possible...
And, just one last thing... "If it happened to me, I'd rather be dead"!?!?!? What sort of despicable person would say something like that? Honestly, are you telling me my life is not worth living? I believe in the merit of helping others, truly, but what you're doing isn't helping, it's telling people their lives are awful and that they need to talk 24/7 about how terrible their lives are. My life IS worth living, and I'll bet I'm happier than the rest of you put together. Despicable.
@funkifise yes you are dispicable along with your pathetic excuse of a husband.i doubt you even have ih or ud sure know what its like.you sound like a faker to me!!!! tell me how much work have you done for the ihrf???? none i bet,so instead of slagging people who give the time and effort then eat your words and do something positive for the ihrf.2009 you aint even started with ih yet come back when you really know about ih and how it devatstaes lives
You say Tehbazil's wife would be sad to see what he said - I am his wife, and I couldn't agree with him more. He is a very compassionate and supportive man. But I could spend today taking photos of myself in hospital looking sad, thinking and talking about how hard life is. Or I could find something positive to focus on and try to live. Nobody here will listen, so I can't be bothered to make the list of 10 points supporting it. I just hope one person will take something good from this. Good luck
This video has done so much for not only me, but the ENTIRE IH community. The person who is making negative remarks OBVIOUSLY has no experience with IH whatsoever. Because anyone that does, would understand why this is such a big help to us. It spreads the awareness that we so desperately need! The Friends Benefit has done nothing but GREAT things for us!! <3 I know you will not let this petty, immature person get in your way. Thank you for all you do, Dori!!!
Ok. Enough. I've been watching this post since I was diagnosed with IH in 2009. I haven't been able to work in even longer than that, because I also suffer from SLE (Lupus). I have had 5 shunt operations so far, I'm due another 2 this Spring. I have a thrombosis from the shunt catheter which caused Pulmonary Embolisms, I'm lucky to be alive, I have the right to talk about this. If you want to read something unbiased, please do - I hope at least one person learns from this. (to be continued)
This vdeo has done so much for the needed awareness for the debilitating invisible illness IH. It has been created for a just purpose and good cause! Dori, Robbie's Mother is a totally dedicated (and nunpaid) champion for the IH Awareness Campaign. I know what it's like to have IH (and it ain't no party). We salute you Dori! Freedom of speech is one thing, but narrow minded-bitching, ignoramouses are something else! I really would like to speak to the said person FTF if U live in the UK.
I feel sick that this man (sorry all the normal decent male guys its not ment for you) thinks he has the right to leave comments that are damm right repulsive, ignorant and just plain beyound WICKED AND UNCALLED FOR I will be reporting you to the You Tube team that will look at this case in detail and I will recommend that you will be banned from using this site! What goes around comes around!!!!!!!
@Tahbazil ~ When we have family members hit with these diseases that have little awareness as well as little funding WE as family members and friends have to get the word out ~ Awareness will lead to FUNDING and funding leads to answers~ which in turn can lead to CURES ~ we only have HOPE that we ourselves have to create ~ so we should be celebrated for not sitting back and complaining but actually making a difference in OUR care. Smiles to Robbie and his family. Kiki
@Tahbazil ~ When we have family members hit with these diseases that have little awareness as well as little funding WE as family members and friends have to get the word out ~ Awareness will lead to FUNDING and funding leads to answers~ which in turn can lead to CURES ~ we only have HOPE that we ourselves have to create ~ so we should be celebrated for not sitting back and complaining but actually making a difference in OUR care. Smiles to Robbie and his family. Kiki
@ Tahbazil -Now please go choke yourself and crawl back under the rock of steaming dog poo you came out from under and quit picking on people that are being a part of the solution and don't waste a moment of the precious life that God continues to show mercy on and use for His glory and purposes. Enough said and end rant!!!
@ Tahbazil -The last thing I have to say is you must feel like a BIG man to not only tear women down, but to do it on top of all the other $&*! they are going through, and many are not lucky enough to have such a loving (yeah I know, more sarcasm again) supporter such as yourself. If this is the kind of support that an IH / Chari patient needs, then I am thankful to God that they DO NOT have such as sack as you, and have their true friends and caregivers to rely on. (Cont.)
@ Tahbazil -September 2010 my best friend and the love of my life was called home to heaven to serve the God she loved most of her life and longed to be with. Now, if you cannot appreciate that someone fare less selfish than yourself is taking front on the IH awareness issue, then I suggest that you apologize and bow out of these discussions. As far as your wife, if I were her and reading your non-compassionate comments, I would give you a swift kick in the nuts that would take surgery to fix.
@ Tahbazil - In 2007 my (then wife) had 8 surgeries in 9 months, survived to collapses in both her ventricles, staph infection twice, and many other issues. Yet, she was one of the main prayer warriors and supports in the initial start-up groups on the social IH community. She is very loved and respected, and rarely complained about herself and supported others before herself. She also had a major blood clotting disorder on top of all this, so I know what it is like first hand. (cont.)
@ Tahbazil - You may friend (can you smell the sarcasm coming already?) truly are a VERY non compassionate piece of work and as I am writing this, praying that God would show you mercy. I do not know what gives you the right to come in here and tear down these people who have such a debilitating illness, and I like how you bragged about your wife being such a trooper. Well if this is about bragging rights, let me be the first to one up you. (Cont.)
This is the first video I ever watched about IH , It enspired me and has been on every phone i have owned since. I have had 6 shunts, i believe the comments about Robbie and his mum below are known as BULLYING and really think they should stop. I wish Robbie and his mom to know you enspire me and dont let some evil person who has obviously nothing better to do get you down. BACK OFF BULLY
@Tahbazil You really need to get a clue!! If it were you suffering with IH you would be appreciative of Dori's efforts to spread the word about IH. The IHRF has worked with her in the past and continues to do so. Can you say the same? Why don't you save your insults and instead commend her for all of her hard work! You make me sick!!!
@Tahbazil It's hard for me to believe that someone as ignorant as you even knows someone with this terribly cruel disease. I have been fighting this for 20+ years now and have found this video to be very beneficial and informative to those that aren't aware of IH or the IHRF. Dori is a hardworking woman behind the scenes for many fund-raising events and has been like an angel sent to those of us that suffer every day. How dare you belittle her and make her feel unwanted by the IH community!
@Tehbazil Do you not realise that the IHRF are behind many of the IH medical breakthroughs in treatment? The treatments that your wife as an IH patient will need. Nobody has forced you to watch this video, so why try to undermine all the good it has done and continues to do? What are YOU doing to help raise awareness of IH? What are YOU doing to raise money for research? It's very easy to sit at home and make nasty comments...IT'S NOT SO EASY TO ACTUALLY WORK TO RAISE AWARENESS!!!
@Tehbazil I am outraged at your comments! I truly am! This video was one of the first of it's kind to help raise awareness of IH and the IHRF. It HAS done great things in raising awareness around the world. Whether you think it has or not IT HAS!!! FACT!!! Dori is to be commended for all her work for the IHRF...most of which you don't see..behind the scenes work is endless..I know coz I do it with Dori! Do we ask for praise? NO! BUT when someone such as you decides to attack us WE WILL SPEAK OUT
@Tehbazil Both Dori and myself work very closely with the IHRF - working tirelessly to raise awareness of IH. Supporting other people with IH...YES I said SUPPORTING!!!! Helping others!!!! Do we get paid for it??? NO!!! Why do we do it? TO HELP OTHERS!!!! Yes there are people in this world like Dori and myself who just want to help others!!!! The friend's benefit concerts are NOT for any self appraisal or any other reason other than to RAISE MONEY FOR RESEARCH INTO IH!!! To support the IHRF !!
@Tehbazil Does your wife know that you are writing these comments? The friend's Benefit concerts raise money for the IH Research foundation to continue it's fight to find better treatments for IH and ultimately a cure for IH. It's not about self pity, it's about raising awareness of IH. Something that I along with Dori am very involved with. It seems that you have ABSOLUTELY NO IDEA what you are talking about!!!!!! When did you last do any fundraising to help the IHRF?
@tehbazil see, I was so upset I duplicated myself. That's what having a brain condition does to us. You have no idea what we go through and the daily pain we live in. Crawl back in your hole and leave us be!
You seem to be having trouble comprehending what I am telling you. It is because of behavior like yours that these people feel alone, scared and sad. You are the reason they feel bad. I will try to make it simple for you, ok? Your kind of 'awareness' and 'support' is like an addictive drug, it feels good until someone stops giving it to you and then you crave it because you can't handle it without it. And you are the drugdealer, refusing to let them kick the habit and become stronger people.
@Tehbazil You are an evil, mean person! I feel for your wife as well! This video has benefited MANY of us with IH that have to deal with misinformed, ill-informed people, such as yourself, and doctors. How dare you attack something that has brought many of us together and benefited the ONE organization fighting our cause, the IHRF. How dare you! You are the miserable one who needs to quit corrupting what is good!
Yes, truly the doctors and hospitals have gained much knowledge from watching some random person look strangely confused next to a drumset, your contribution to society is done.
You are not helping others you are an enabler. You put these videos up just like youtube is filled with videos of people cutting themselves to express their horrible anguish. People watch them and feel better, for a moment, until of course they have to deal with the 'terrible' 'hardships' of real life and instead of actually dealing with the problem, out comes the razorblade. Videos like these are their analoguous razorblade. Completely useless and self-destructive.
@Tehbazil All I can say is I feel for your wife - you have a lack of compassion for people. I personally know this video has given doctors and hospitals awareness and if you had any intelligence whatsoever you'd see from the other posts here it has brought people together that felt very alone. You're a miserable excuse for a human being!
@Tehbazil are you insane???? U must be!!!! the freinds benefit has worked tirelessly from the bottom of her heart to help us. ive had ih for 9 years and still suffering day to day,all i can imagine if your wife has it and this is your attitude is that she has it mild and continue every day life...come on them mr gob almighty tell me what that is cos ih took my life and i havnt had one day in 9 years well enough to do anything.you are a very disgusting sad little man and i feel sorry for wifey
Well, that is a good point. I didn't realize you had gotten money and had 6 concerts! Oh dearie me! I am indeed taken aback and humbled by this revelation as it shows that this video is in fact courageous and not self-serving lamentable tripe. There is indeed plenty of self-pity. Without self-pity there would be no need for 'networking' and people wouldn't need your kind of 'help'. Grow up and move on and maybe help people who actually have it tough. There is nothing to respect in any of this.
@Tehbazil -- Where do you get the idea that FriendsBenefit is immersed in self-pity? Your comment seems rather rude in my opinion. The idea here is to make people aware for a good and righteous cause. It's about networking and helping people. There is no self-pity here, there is no lack of compassion, and there are no self serving complaints.
I do not have any afflictions that set me back from the norm but I know the people behind this cause, and I hope you will be more respectful next time.
Maybe instead of feeling bad yourself and putting up self-pitying videos you should think of all the people who have it much worse without complaining and try to actually help people instead of trying to help yourself to their compassion My wife has the same illness and has had 5 consequtive surgeries, oh, and lupus. She spent her time in hospital trying to do productive things and look on the bright side rather than taking self-pitying photos and complaining about how hard life is.
@Tehbazil We've had 6 concerts benefits and raised thousands of dollars for EVERYONE with IH (including your wife) to get awareness and a cure. This isn't about self-pity - my son's doing great. Maybe you should think about what you write and read some of the comments here! This video has help people all around the world! Maybe you should spend your time trying to help others rather than belittling them for trying. Very sad what you wrote!
i was diagnosed 3 years and still live in pain every day evan after my 3 surgys the doctors still dont know whats wrong. they think it mite be my heart they arent sure.
I watch this movie and it makes me tear up every time i was dignosed with this 2 years ago it is a very painful thing and ppl dont know how bad it really is. it took them 4 months to find mine. and i was losing my eye sight everyday and was going through so much pain it was unbelieveable. Hang in there...
I saw Robbie yesterday after a long while. We grew up together. He's been a friend of mine since grade school. He seems to be doing good.He let me borrow the fifth element on Blu ray,and we had a great time at gamenight just owning the competition.I hope he stays healthy,and lives a long and fulfilling life.
I love the song. This video made me cry as I thought of how my family must have felt looking at me in the hospital. You don't think of how horrible a situation it is when you are the one having brain surgery. All that was going through my mind was please get this pressure out before my vision goes completely. Thanks for sharing.
This was made for awareness/research funding for Intracranial Hypertension by Tim Piper. This is my son's story. PLEASE JOIN US on Facebook - we can make a difference - WE ARE!!! Thank you Tim!!! Facebook name: Dori Harrison Clements
I am so glad you did this song I have ih too I have a brain shunt and thanks to people like you we WILL find a cure if you deside to put this on a cd please im me I would love to get this played so we can get some more adwareness.
Amazing song! Think that I have played it 20 times here :) I am a 28 years old norwegian woman with the same diagnosis. I had a stroke when I was 19, (couse of a Leiden Mutasjon). In 2004 I got diagosed with this also. First I had a Lumbal Shunt 2 years ago, but dident work. 2 months ago they putted a shunt in my brain.Etiher this helped,and I got a leakage in my back after removing the LP shunt.Now they have putted a new one,and I am still In hospitale.I gotta sey that the head ace is so hard!!
i had chiari decompression surgery in June of 07, and I'm still recovering. God is watching over you all, as He definently did for me, and just remember He has a plan and a reason for this. He knows why this is going on. My best friend has IH, and can definently see God's work through her life! All of you are my heros and you are in my prayers!
this video is helpful im 14 and im male from the uk i have had the disese since i was 8 years of age i have had 6 lumber puctures and 2 brain probs i will be getting a shunt soon as im slowly going blind
Hi Nitroracer - I'm Robbie's mom. There are alot of 'IH' people on Facebook. My name there is Dori Harrison Clements there and I'd love to connect you to others going through this so very tough disorder. Much love and headache-free days to you sweetheart!
Hope you get better. My brother has gone through over 19 surguries for a simular condition called chari one he has terrible headaches every day and is often going to ucla for treatment but nothing has seemed to work. He has had at least 15 shunt failures for no apparent reason. He is going into surgury next week. We just found out that he is also pre diabetic. So for all you people i witness what its like and one day WE WILL FIND A CURE!
Excellent song! Robbie, hang in there. I have BIH as well. I've had it for seven years as a result of taking Accutane. It's a horrible disease, I'm in pain every day. I'll say a prayer for you. You've been very brave and you're a positive influence for all of us. Thanks for sharing your story with us.
Hang in there...I just had my VP Shunt placed on 1/20 with a revision on 1/22. I have had some complications, but improving day by day. God Bless You Bunches!
Hey Robbie- I just wanted to let you know you're really strong and have a lot of courage! I am 14, and have ptc due to lyme disease. It'll burn out eventually, but we're not sure when. It's really a crazy thing, and we do need more research on it. Keep fighting, you're really brave!
Gday thanks for posting your video and raising awareness, i have BIH and have made a few video's as well to help others understand what we go through everyday living with BIH. Stay positive, love life and live every moment, and never take anything for granted.
That's awesome! We're all in this together and you're definately showing others what we need. THANK YOU! We'll get our help - you, my son and SO MANY others WILL get some help! Much love, Dori
I love this song. Your son is very brave. I was diagnosed with pseudotumor cerebri in september and am on 2500mg of diamox daily hoping i dont have to have surgery. None of my doctors know why I have it because i'm not overweight at all, your son isnt overweight either. Did the doctors have any reasoning as to why he has it?
This was awesome ihave had this aweful thing all my life , i know the pain and the tiredness so well, congrats on putting together such a explicit song and footage for people to become more aware.. Robbie , life does go on and you can make it as great as you want it to be.. I have a lumbar shunt, 14yrs now.. god bless xx
Yes, that's right. Hopefully one day everything will be all right with us. I do not know what would I have done without my family in this difficult time...
Nobody knows about the pain in your head. If it happened to me, I'd rather be dead. But that's no young man's option you've got things to do. I can't imagine what it takes to be you. No body knows 'cuz they just can't see. But we'll make them aware, eventually. Because there's too much hurting from this silent disease. It's time to turn our hopes into realities. Robbie can you hear me? You know it's gunna be alright. I think you're here to shine the light.
Without a doubt we're gunna work it out. Robbie can you hear me? You know they're bound to find a cure. And if our dream is premature just know, one fine day it's gunna be okay!
Such a crabby disease that I share with Robbie. Sorry someone so young has to go thru this aweful pain. Hope the shunt in his brain is helping him w/the pain.
Here in the UK we call this illness Idiopathic Intracranial Hypertension. IIH really does suck. My 13 yr old suffers with it, was diagnosed September 07. She too is registered with the IHRF, we gotta find a cure for this. Great Song! thanks for sharing...
I also have this condition. No matter how much others want to understand how I am feeling unless they have it also they have no clue. I'm tired of doctor's acting like it is my weight. Yes right this minute I am over weight. BUT I have had it at a normal healthy weight too. All the different meds they have had me on did nothing but make me gain weight and put me in the bed. I am now thinking of getting the shunt but this scares the crap out of me....The worse thing about IH is feeling alone :O(
starrchild130 4 weeks ago
My son was 14 when he was diagnosed with IH. Dori was a huge support for him and I think God for her and Robbie. And my son was very active and athletic and in no way overweight when he was diagnose. And there was no cause for it.
amw0716 1 year ago
Every time I'm feeling bad I listen to this and watch the video. It gives me hope and inspiration and comforts me to know I am not alone. Thank you Dori and Robbie (and Tim) for this fabulous video and song. Many days I would not have made it through without it.
zenapal 1 year ago
This video has helped many people, as well as myself who have IH, realize that we are not alone. The sad thing is there is always someone who has this condition worse than others. There are also people who have more than one condition/disease along with IH. Instead of bashing other people, we should be banning together for support. I pray that people see the damage they are causing by spreading the hate.
Thank you to everyone who has supported this video and continues to help those with IH.
StacyLupinacci 1 year ago 4
Dori (Robbie's mom) has done so much to raise awareness of IH and money to help find a cure that it's despicable that anyone could think her intent was in the least way self-serving or caused other IH patients to feel badly.
Even tho Robbie is now doing well and has been for a while Dori continues to fight tirelessly for those of us who have IH to find a cure and have more resources to make that happen.
This video has also helped many of my family and friends understand what I'm dealing with.
zenapal 1 year ago 4
I'm deeply saddened and amazed by some of the comments I've seen posted here recently. This video, song and Robbie's story are certainly NOT about self-pity and make no one feel alone, scared if they truly have this disorder.
When I was diagnosed this was the first thing I found online regarding IH and it helped me immensely to know I was NOT alone...that there are others out there who have it. I was able to connect with quite a few other IH'ers via their posts and have made awesome friends.
zenapal 1 year ago 2
@Tehbazil and @funkfise it is sad to see people doing nothing but attacking someone who is working so hard to help others. Creating a video to raise awareness is not about self pity. We do not wallow in what IH has taken from us. Instead, we use it to become stronger. I am sorry for whatever happened to you to make you feel that you need to attack others, but your posts are not about trying to establish intelligent debate.
THANK YOU to Dori and all my friends who work so hard to raise awareness.
Retecha 1 year ago 3
i have had several shunts, and do not have ih due to being overweight. when i was diagnosed i was thin, healthy and very active. shunts fail more than they work. i hope that you don't have to deal with what many of us have dealt with.
the ih community has helped me and many others deal with living the day to day that comes with chronic ih.
thank you dori for being one of our champions, don't let the comments of these two people change you. thank you for fighting for us.
brookiepetti 1 year ago 6
cont'd I know as I have many friends who have undergone yrs and yrs and yrs of repeated surgeries coz their only option is shunts as the meds don't work. Shunts ARE NOT the magic answer to IH! These people are NOT all overweight women, they are men, women and children of all ages - many of whom are of average weight. You say that we revel in our own ignorance... interesting! You are the one quoting out of date knowledge of IH! People like you are the exact reason we need more awareness
vickiTauthor 1 year ago 3
cont'd "It already has an effective treatment, the shunt." YET AGAIN WRONG!!!!!
The shunt may have worked for you so far and I hope for your sake that you're one of the very very few for whom the shunt works for a long time..however your ignornace of IH is quite frankly laughable! Shunts constantly need adjusting, get infected, get blocked, stop working, and need replacing.
vickiTauthor 1 year ago 3
cont'd " But it is a syndrome, it has a cause, almost certainly for all of you it is weight-related, you can't expect the IHRF to fix that." AGAIN - WRONG!!!! IT'S THESE KIND OF ANCIENT ASSUMPTIONS THAT RESEARCH IS PROVING TO BE WRONG!! IT'S THIS KIND OF ATTITUDE WE ARE FIGHTING! It can affect ANYONE, ANY AGE, ANY RACE, ANY WEIGHT!!!!
My husband has never been overweight! Oh yes and he is also male ...next you'll be rolling out the other ancient idea that only overweight women get IH!
vickiTauthor 1 year ago 10
@vickiTauthor I am not obese, even though prednisone has caused me to gain some weight. I have pseudotumor cerebri.
pris72 10 months ago
@pris72 I'm sorry if you thought that i was saying that only overweight women get IH...I wasn't.
I was responding to someone who had been making comments stating that only overweight people get IH... I know that this isn't true! It is an ancient myth regarding IH.
IH can affect anyone, any age, any weight. Indeed my husband who has had chronic IH for many yrs now has never been overweighht and he is male! Sorry for any misunderstanding regarding my comments.
vickiTauthor 10 months ago
@vickiTauthor I am 5'7'' and weigh 128 and have IH. When I first started experiencing pain my boyfriend suggested maybe I needed glasses. An opthamologist noted papilllidema in both eyes following an eye exam (my vision was perfect btw). He had me come back in a month later to take another look, my optical nerve was still swollen.This doctor ignored it because I didn't "fit the demographic". If he didn't ignore that major symptom, which should have been taken seriously considering it's used
mooshmoosh13 1 week ago
@mooshmoosh13 as diagnostic criteria, I wouldn't have to had dealt with such severe pain for a year. I went to countless doctors and everyone ignored me. All because of their preconceived ideas regarding the demographics of those with IH. Talk about f-ing bullshit
mooshmoosh13 1 week ago
@funkifise OMG I~ cannot believe your comments
IN ANSWER TO YOUR COMMENTS -
"You seem to have misunderstood my point. You could be living a life of interesting hobbies rather than obssessing about an illness." - ~We DO have a life full of other things other than IH awareness!!!! "Doctors understand and treat it." Ermm....NO THEY DON'T!!!!! SO MANY DRS DON'T UNDERSTAND IT AND DON'T TREAT IT PROPERLY!
vickiTauthor 1 year ago 2
IF IT HAPPENED TO ME, I'D RATHER BE DEAD
...
Supportive.
funkifise 1 year ago
All you have succeded in doing is prove to me that many of you are MORE pathetically self-pitying than I imagined, in my analogy, you are the drug-addicts. However, seeing as how analogies and any intelligent points seem to be too much for you to understand, I won't make the effort needed to refute any of your laughable(!) comments and instead just make you all aware that not a single one of you had succeded in responding to what I have actually said. That. Is almost as pathetic as this video.
Tehbazil 1 year ago
Indeed you have shown me to be a horrible person with all your messages full of hate and namecalling, you are indeed my moral superiors. Well done. I came here hoping to get some sort of intelligent debate on the topic and all I got was a gang of people not only unable to write legibly but unable to properly respond to any of my points. Instead choosing to revel in their own ignorance spouting catchphrases and insults and irrelivant points that have nothing to do with what I have said.
Tehbazil 1 year ago
Comment removed
hiccups1971 1 year ago
Anyway, nobody here is willing to even consider my points in the first place, which is a real shame because I'd actually be really happy if somebody realised that watching videos about an illness isn't as healthy as adjusting to it and trying to find something else to be happy about. I won't be checking the responses or responding again on here, as nobody is willing to consider an actual rational discussion. Please, just someone realise we have a point and don't spend your life talking about IH.
funkifise 1 year ago
@funkifise the video helps people adjust,glad your not returning as all you do is talk out of your backsides.you even have to like your own comments,we may have a brain condition but unlike you we aint thick!!!!!!!!!!!!!
hiccups1971 1 year ago 3
You seem to have misunderstood my point. You could be living a life of interesting hobbies rather than obssessing about an illness. Doctors understand and treat it. But it is a syndrome, it has a cause, almost certainly for all of you it is weight-related, you can't expect the IHRF to fix that. It already has an effective treatmen, the shunt. And the only way to prevent it in the first place is to lose weight. Awareness won't change that, neither will the IHRF. Only you can change your future.
funkifise 1 year ago
@funkifise how as usa size 8/10 is it obese???? you really dont have a clue and i still believe you as a fake TOTALLY.your the one obsessed coming here hurting good people,the rest of us get on with life as best we can.if you and your hubby had a brain cell between you ud see the video is to raise awareness for a cure for you,yes you and all of us.oh and if your hubby knew anything we dont spell proper cos most of us is blind,shows how much he knows!!!!!!!!!!!!!!!!
hiccups1971 1 year ago 3
@funkifise shunts dont always work,i and hundreds others know this and its nothing to do with weight,may be for you but certanly isnt for me!!!!!!! im a thin iher u mong!!!!!!!!!!!!
hiccups1971 1 year ago 2
Dori came to visit us personally after my daughter was diagnosed with IH and it meant so much to me. Carly suffered through a year of repeated hospitalizations and the accompanying trauma of it all, but after brain surgery for a partially collapsed vein in her head, she is headache free now. I applaud Dori's valiant effort to bring awareness to this debilatating disease, and am appalled at any criticism of this video.
sherylrb 1 year ago 2
@Tahbazil and @funkifise If you consider yourselves to be so happy then why do you feel the need to attack someone who is doing nothing but good?
We are positive people and our lives ARE worth living!! However when someone blatently attacks a champion of the cause who has devoted so much of her life to helping others then you will see us defend her! and as for being positive - Dori is one of the most positive people on the planet! Get ur facts straight before you attack!
vickiTauthor 1 year ago
@Tahbazil and @funkifise then that is up to you, but don't slag off those (inc myself) who have chosen to devote their time to really making a difference!
Whether you personally believe that these videos help or not quite frankly is irrelevant because it has been proven that THEY DO HELP!!!! During IH awareness mth 2010 the IH brain pain team raised over $1000 for IH research. How much did you raise? Videos such as this one helped people to understand more about IH and help raise awareness.
vickiTauthor 1 year ago
@Tahbazil and @funkifise You say that we are not positive... we are positive and we are focused on raising awareness of IH andsupporting the work of the IHRF. The vast majority of IH patients I know are strong, positive people, trying to make the most of each new day. You do not know us personally so how can you judge us?These vdeos are made to raise awareness, not to say 'woe is me 24/7' I repeat to raise awareness!!! to help more people understand. If you choose to not talk about ur IH cont'd
vickiTauthor 1 year ago
@Tahbazil & @funkifise---i've had IH for 3 years and i'm one of the lucky ones...i'm in a controlled remission now. i look on the brighter side of things daily...i know i've survived worse. you are both disgusting people! Dori and this video, and the rest of us that are yelling at you have raised more money for research than most people will ever see, and we share our stories to raise awareness. none of us seek pity. you need to get your story straight before you start yelling at people!!!
courtbaby1214 1 year ago
@Tahbazil, I am basically speechless. I will pray for you and your wife, as I do not want to say something in anger I may regret! I pray your wife is as pain-free as possible...
prescriptionmom 1 year ago
And, just one last thing... "If it happened to me, I'd rather be dead"!?!?!? What sort of despicable person would say something like that? Honestly, are you telling me my life is not worth living? I believe in the merit of helping others, truly, but what you're doing isn't helping, it's telling people their lives are awful and that they need to talk 24/7 about how terrible their lives are. My life IS worth living, and I'll bet I'm happier than the rest of you put together. Despicable.
funkifise 1 year ago
@funkifise yes you are dispicable along with your pathetic excuse of a husband.i doubt you even have ih or ud sure know what its like.you sound like a faker to me!!!! tell me how much work have you done for the ihrf???? none i bet,so instead of slagging people who give the time and effort then eat your words and do something positive for the ihrf.2009 you aint even started with ih yet come back when you really know about ih and how it devatstaes lives
hiccups1971 1 year ago
You say Tehbazil's wife would be sad to see what he said - I am his wife, and I couldn't agree with him more. He is a very compassionate and supportive man. But I could spend today taking photos of myself in hospital looking sad, thinking and talking about how hard life is. Or I could find something positive to focus on and try to live. Nobody here will listen, so I can't be bothered to make the list of 10 points supporting it. I just hope one person will take something good from this. Good luck
funkifise 1 year ago
Amen drapdon...and thank you to everyone supporting Dori and Robbie.
prescriptionmom 1 year ago
This video has done so much for not only me, but the ENTIRE IH community. The person who is making negative remarks OBVIOUSLY has no experience with IH whatsoever. Because anyone that does, would understand why this is such a big help to us. It spreads the awareness that we so desperately need! The Friends Benefit has done nothing but GREAT things for us!! <3 I know you will not let this petty, immature person get in your way. Thank you for all you do, Dori!!!
hilandmileyfan 1 year ago
Ok. Enough. I've been watching this post since I was diagnosed with IH in 2009. I haven't been able to work in even longer than that, because I also suffer from SLE (Lupus). I have had 5 shunt operations so far, I'm due another 2 this Spring. I have a thrombosis from the shunt catheter which caused Pulmonary Embolisms, I'm lucky to be alive, I have the right to talk about this. If you want to read something unbiased, please do - I hope at least one person learns from this. (to be continued)
funkifise 1 year ago
This vdeo has done so much for the needed awareness for the debilitating invisible illness IH. It has been created for a just purpose and good cause! Dori, Robbie's Mother is a totally dedicated (and nunpaid) champion for the IH Awareness Campaign. I know what it's like to have IH (and it ain't no party). We salute you Dori! Freedom of speech is one thing, but narrow minded-bitching, ignoramouses are something else! I really would like to speak to the said person FTF if U live in the UK.
musketman1 1 year ago
I feel sick that this man (sorry all the normal decent male guys its not ment for you) thinks he has the right to leave comments that are damm right repulsive, ignorant and just plain beyound WICKED AND UNCALLED FOR I will be reporting you to the You Tube team that will look at this case in detail and I will recommend that you will be banned from using this site! What goes around comes around!!!!!!!
drapdon 1 year ago 3
@drapdon DORI WE ARE ALL WITH YOU X X
drapdon 1 year ago
This has been flagged as spam show
@Tahbazil ~ When we have family members hit with these diseases that have little awareness as well as little funding WE as family members and friends have to get the word out ~ Awareness will lead to FUNDING and funding leads to answers~ which in turn can lead to CURES ~ we only have HOPE that we ourselves have to create ~ so we should be celebrated for not sitting back and complaining but actually making a difference in OUR care. Smiles to Robbie and his family. Kiki
khart531 1 year ago
@Tahbazil ~ When we have family members hit with these diseases that have little awareness as well as little funding WE as family members and friends have to get the word out ~ Awareness will lead to FUNDING and funding leads to answers~ which in turn can lead to CURES ~ we only have HOPE that we ourselves have to create ~ so we should be celebrated for not sitting back and complaining but actually making a difference in OUR care. Smiles to Robbie and his family. Kiki
khart531 1 year ago
@ Tahbazil -Now please go choke yourself and crawl back under the rock of steaming dog poo you came out from under and quit picking on people that are being a part of the solution and don't waste a moment of the precious life that God continues to show mercy on and use for His glory and purposes. Enough said and end rant!!!
obe1968 1 year ago
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obe1968 1 year ago
@ Tahbazil -The last thing I have to say is you must feel like a BIG man to not only tear women down, but to do it on top of all the other $&*! they are going through, and many are not lucky enough to have such a loving (yeah I know, more sarcasm again) supporter such as yourself. If this is the kind of support that an IH / Chari patient needs, then I am thankful to God that they DO NOT have such as sack as you, and have their true friends and caregivers to rely on. (Cont.)
obe1968 1 year ago
@ Tahbazil -September 2010 my best friend and the love of my life was called home to heaven to serve the God she loved most of her life and longed to be with. Now, if you cannot appreciate that someone fare less selfish than yourself is taking front on the IH awareness issue, then I suggest that you apologize and bow out of these discussions. As far as your wife, if I were her and reading your non-compassionate comments, I would give you a swift kick in the nuts that would take surgery to fix.
obe1968 1 year ago
@ Tahbazil - In 2007 my (then wife) had 8 surgeries in 9 months, survived to collapses in both her ventricles, staph infection twice, and many other issues. Yet, she was one of the main prayer warriors and supports in the initial start-up groups on the social IH community. She is very loved and respected, and rarely complained about herself and supported others before herself. She also had a major blood clotting disorder on top of all this, so I know what it is like first hand. (cont.)
obe1968 1 year ago
@ Tahbazil - You may friend (can you smell the sarcasm coming already?) truly are a VERY non compassionate piece of work and as I am writing this, praying that God would show you mercy. I do not know what gives you the right to come in here and tear down these people who have such a debilitating illness, and I like how you bragged about your wife being such a trooper. Well if this is about bragging rights, let me be the first to one up you. (Cont.)
obe1968 1 year ago
This is the first video I ever watched about IH , It enspired me and has been on every phone i have owned since. I have had 6 shunts, i believe the comments about Robbie and his mum below are known as BULLYING and really think they should stop. I wish Robbie and his mom to know you enspire me and dont let some evil person who has obviously nothing better to do get you down. BACK OFF BULLY
POPPET68 1 year ago
@Tahbazil You really need to get a clue!! If it were you suffering with IH you would be appreciative of Dori's efforts to spread the word about IH. The IHRF has worked with her in the past and continues to do so. Can you say the same? Why don't you save your insults and instead commend her for all of her hard work! You make me sick!!!
IHateIH 1 year ago
@Tahbazil It's hard for me to believe that someone as ignorant as you even knows someone with this terribly cruel disease. I have been fighting this for 20+ years now and have found this video to be very beneficial and informative to those that aren't aware of IH or the IHRF. Dori is a hardworking woman behind the scenes for many fund-raising events and has been like an angel sent to those of us that suffer every day. How dare you belittle her and make her feel unwanted by the IH community!
IHateIH 1 year ago
@Tehbazil Do you not realise that the IHRF are behind many of the IH medical breakthroughs in treatment? The treatments that your wife as an IH patient will need. Nobody has forced you to watch this video, so why try to undermine all the good it has done and continues to do? What are YOU doing to help raise awareness of IH? What are YOU doing to raise money for research? It's very easy to sit at home and make nasty comments...IT'S NOT SO EASY TO ACTUALLY WORK TO RAISE AWARENESS!!!
vickiTauthor 1 year ago
@Tehbazil I am outraged at your comments! I truly am! This video was one of the first of it's kind to help raise awareness of IH and the IHRF. It HAS done great things in raising awareness around the world. Whether you think it has or not IT HAS!!! FACT!!! Dori is to be commended for all her work for the IHRF...most of which you don't see..behind the scenes work is endless..I know coz I do it with Dori! Do we ask for praise? NO! BUT when someone such as you decides to attack us WE WILL SPEAK OUT
vickiTauthor 1 year ago
@Tehbazil Both Dori and myself work very closely with the IHRF - working tirelessly to raise awareness of IH. Supporting other people with IH...YES I said SUPPORTING!!!! Helping others!!!! Do we get paid for it??? NO!!! Why do we do it? TO HELP OTHERS!!!! Yes there are people in this world like Dori and myself who just want to help others!!!! The friend's benefit concerts are NOT for any self appraisal or any other reason other than to RAISE MONEY FOR RESEARCH INTO IH!!! To support the IHRF !!
vickiTauthor 1 year ago
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vickiTauthor 1 year ago
@Tehbazil Does your wife know that you are writing these comments? The friend's Benefit concerts raise money for the IH Research foundation to continue it's fight to find better treatments for IH and ultimately a cure for IH. It's not about self pity, it's about raising awareness of IH. Something that I along with Dori am very involved with. It seems that you have ABSOLUTELY NO IDEA what you are talking about!!!!!! When did you last do any fundraising to help the IHRF?
vickiTauthor 1 year ago
@tehbazil see, I was so upset I duplicated myself. That's what having a brain condition does to us. You have no idea what we go through and the daily pain we live in. Crawl back in your hole and leave us be!
Sugarlips1313 1 year ago
You seem to be having trouble comprehending what I am telling you. It is because of behavior like yours that these people feel alone, scared and sad. You are the reason they feel bad. I will try to make it simple for you, ok? Your kind of 'awareness' and 'support' is like an addictive drug, it feels good until someone stops giving it to you and then you crave it because you can't handle it without it. And you are the drugdealer, refusing to let them kick the habit and become stronger people.
Tehbazil 1 year ago
@Tehbazil You are an evil, mean person! I feel for your wife as well! This video has benefited MANY of us with IH that have to deal with misinformed, ill-informed people, such as yourself, and doctors. How dare you attack something that has brought many of us together and benefited the ONE organization fighting our cause, the IHRF. How dare you! You are the miserable one who needs to quit corrupting what is good!
Sugarlips1313 1 year ago
Yes, truly the doctors and hospitals have gained much knowledge from watching some random person look strangely confused next to a drumset, your contribution to society is done.
Tehbazil 1 year ago
You are not helping others you are an enabler. You put these videos up just like youtube is filled with videos of people cutting themselves to express their horrible anguish. People watch them and feel better, for a moment, until of course they have to deal with the 'terrible' 'hardships' of real life and instead of actually dealing with the problem, out comes the razorblade. Videos like these are their analoguous razorblade. Completely useless and self-destructive.
Tehbazil 1 year ago
@Tehbazil All I can say is I feel for your wife - you have a lack of compassion for people. I personally know this video has given doctors and hospitals awareness and if you had any intelligence whatsoever you'd see from the other posts here it has brought people together that felt very alone. You're a miserable excuse for a human being!
thefriendsbenefit 1 year ago
@Tehbazil are you insane???? U must be!!!! the freinds benefit has worked tirelessly from the bottom of her heart to help us. ive had ih for 9 years and still suffering day to day,all i can imagine if your wife has it and this is your attitude is that she has it mild and continue every day life...come on them mr gob almighty tell me what that is cos ih took my life and i havnt had one day in 9 years well enough to do anything.you are a very disgusting sad little man and i feel sorry for wifey
hiccups1971 1 year ago
Well, that is a good point. I didn't realize you had gotten money and had 6 concerts! Oh dearie me! I am indeed taken aback and humbled by this revelation as it shows that this video is in fact courageous and not self-serving lamentable tripe. There is indeed plenty of self-pity. Without self-pity there would be no need for 'networking' and people wouldn't need your kind of 'help'. Grow up and move on and maybe help people who actually have it tough. There is nothing to respect in any of this.
Tehbazil 1 year ago
@Tehbazil -- Where do you get the idea that FriendsBenefit is immersed in self-pity? Your comment seems rather rude in my opinion. The idea here is to make people aware for a good and righteous cause. It's about networking and helping people. There is no self-pity here, there is no lack of compassion, and there are no self serving complaints.
I do not have any afflictions that set me back from the norm but I know the people behind this cause, and I hope you will be more respectful next time.
dickmurchy 1 year ago
I Have this I had a shunt in my back so im fine now ... But a little blind.
BeHappy545 1 year ago
@BeHappy545 :) I'm glad the shunt helps. Be happy :)
funkifise 1 year ago
Maybe instead of feeling bad yourself and putting up self-pitying videos you should think of all the people who have it much worse without complaining and try to actually help people instead of trying to help yourself to their compassion My wife has the same illness and has had 5 consequtive surgeries, oh, and lupus. She spent her time in hospital trying to do productive things and look on the bright side rather than taking self-pitying photos and complaining about how hard life is.
Tehbazil 1 year ago
@Tehbazil We've had 6 concerts benefits and raised thousands of dollars for EVERYONE with IH (including your wife) to get awareness and a cure. This isn't about self-pity - my son's doing great. Maybe you should think about what you write and read some of the comments here! This video has help people all around the world! Maybe you should spend your time trying to help others rather than belittling them for trying. Very sad what you wrote!
thefriendsbenefit 1 year ago
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joannacampos28 1 year ago
i was diagnosed 3 years and still live in pain every day evan after my 3 surgys the doctors still dont know whats wrong. they think it mite be my heart they arent sure.
britt296112 1 year ago
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Great Video, I was diagnosed almost 7 years ago:(
amandaybeto 1 year ago
Great Vidoe, I was diagnosed almost 7 years ago:(
amandaybeto 1 year ago
I watch this movie and it makes me tear up every time i was dignosed with this 2 years ago it is a very painful thing and ppl dont know how bad it really is. it took them 4 months to find mine. and i was losing my eye sight everyday and was going through so much pain it was unbelieveable. Hang in there...
quincygurl23 1 year ago
I saw Robbie yesterday after a long while. We grew up together. He's been a friend of mine since grade school. He seems to be doing good.He let me borrow the fifth element on Blu ray,and we had a great time at gamenight just owning the competition.I hope he stays healthy,and lives a long and fulfilling life.
FrostyManElemental 1 year ago
@FrostyManElemental I'm Robbie's mom - he's doing great but IH is a nasty disorder. I'm so proud of him! BTW, he has the best friends! You're MB?
thefriendsbenefit 1 year ago
What a touching but uplifting video...
his2dcide 2 years ago
I love the song. This video made me cry as I thought of how my family must have felt looking at me in the hospital. You don't think of how horrible a situation it is when you are the one having brain surgery. All that was going through my mind was please get this pressure out before my vision goes completely. Thanks for sharing.
Brittydragon 2 years ago
This was made for awareness/research funding for Intracranial Hypertension by Tim Piper. This is my son's story. PLEASE JOIN US on Facebook - we can make a difference - WE ARE!!! Thank you Tim!!! Facebook name: Dori Harrison Clements
thefriendsbenefit 2 years ago 2
I am so glad you did this song I have ih too I have a brain shunt and thanks to people like you we WILL find a cure if you deside to put this on a cd please im me I would love to get this played so we can get some more adwareness.
blindone40206 2 years ago
Amazing song! Think that I have played it 20 times here :) I am a 28 years old norwegian woman with the same diagnosis. I had a stroke when I was 19, (couse of a Leiden Mutasjon). In 2004 I got diagosed with this also. First I had a Lumbal Shunt 2 years ago, but dident work. 2 months ago they putted a shunt in my brain.Etiher this helped,and I got a leakage in my back after removing the LP shunt.Now they have putted a new one,and I am still In hospitale.I gotta sey that the head ace is so hard!!
lopex1980 2 years ago
i had chiari decompression surgery in June of 07, and I'm still recovering. God is watching over you all, as He definently did for me, and just remember He has a plan and a reason for this. He knows why this is going on. My best friend has IH, and can definently see God's work through her life! All of you are my heros and you are in my prayers!
Jesusfreedme47 2 years ago
this video is helpful im 14 and im male from the uk i have had the disese since i was 8 years of age i have had 6 lumber puctures and 2 brain probs i will be getting a shunt soon as im slowly going blind
nitroracer94 2 years ago
Hi Nitroracer - I'm Robbie's mom. There are alot of 'IH' people on Facebook. My name there is Dori Harrison Clements there and I'd love to connect you to others going through this so very tough disorder. Much love and headache-free days to you sweetheart!
thefriendsbenefit 2 years ago
thanks for that i will do im in hospital for the next 3 weeks so i can before then
nitroracer94 2 years ago
Hope you get better. My brother has gone through over 19 surguries for a simular condition called chari one he has terrible headaches every day and is often going to ucla for treatment but nothing has seemed to work. He has had at least 15 shunt failures for no apparent reason. He is going into surgury next week. We just found out that he is also pre diabetic. So for all you people i witness what its like and one day WE WILL FIND A CURE!
ClaudSeemore 2 years ago
Thanks for allowing me to use your song on my show today! I also have PTC / IH and I am sending MUCH healing to Robbie for pain free days ahead!!!
stacylupe 2 years ago
Excellent song! Robbie, hang in there. I have BIH as well. I've had it for seven years as a result of taking Accutane. It's a horrible disease, I'm in pain every day. I'll say a prayer for you. You've been very brave and you're a positive influence for all of us. Thanks for sharing your story with us.
saveusrecycle 2 years ago
God Bless You!
nokturnal7 2 years ago
love the song. i have ih..was diagnosed in 2004. i take diamox daily and have had some permanent vision damage. bless you! stay strong...
wssu1997 2 years ago
I am a IH patient, and I will be passing this on to all the others I know. Thank you for making this Awesome song and video!!!!
brookiepetti 3 years ago
Hey Robbie,
Hang in there...I just had my VP Shunt placed on 1/20 with a revision on 1/22. I have had some complications, but improving day by day. God Bless You Bunches!
(((Hugs)))
Robin
prescriptionmom 3 years ago
Hey Robbie- I just wanted to let you know you're really strong and have a lot of courage! I am 14, and have ptc due to lyme disease. It'll burn out eventually, but we're not sure when. It's really a crazy thing, and we do need more research on it. Keep fighting, you're really brave!
awarenessdaytributes 3 years ago
You have a lot of courage and are very brave. My heart is with you! Dori (Robbie's mom)
thefriendsbenefit 3 years ago
Gday thanks for posting your video and raising awareness, i have BIH and have made a few video's as well to help others understand what we go through everyday living with BIH. Stay positive, love life and live every moment, and never take anything for granted.
NikkiBlu78
nikkiblu78 3 years ago
That's awesome! We're all in this together and you're definately showing others what we need. THANK YOU! We'll get our help - you, my son and SO MANY others WILL get some help! Much love, Dori
thefriendsbenefit 3 years ago
I love this song. Your son is very brave. I was diagnosed with pseudotumor cerebri in september and am on 2500mg of diamox daily hoping i dont have to have surgery. None of my doctors know why I have it because i'm not overweight at all, your son isnt overweight either. Did the doctors have any reasoning as to why he has it?
mariahsdlmir 3 years ago
ive had it for 7 years and after 30+ lumbar punctures and a spinal shunt which has come 'undone' im on oralmorphine every day.
im only glad it isnt passed down, as i'd die if my kids got it
xgothxbarbiex 3 years ago
Yea I two have had ptc for 2 years now. Nice video
1wikked12 3 years ago
I have had IIH for 2 years.
I love the song. It really sends the message out
char3106 3 years ago
This was awesome ihave had this aweful thing all my life , i know the pain and the tiredness so well, congrats on putting together such a explicit song and footage for people to become more aware.. Robbie , life does go on and you can make it as great as you want it to be.. I have a lumbar shunt, 14yrs now.. god bless xx
imadabest 3 years ago
You're welcome! Robbie's my son - IH needs research, awareness and a cure - for everyone!
thefriendsbenefit 3 years ago
Yes, that's right. Hopefully one day everything will be all right with us. I do not know what would I have done without my family in this difficult time...
How is Robbie feeling now?
With best regards!
SofiyaRa 3 years ago
I know the bad feeling. Since 2005 I have PTC.
Can anybody write the text of that nice song?
Best regards!
SofiyaRa 3 years ago
Nobody knows about the pain in your head. If it happened to me, I'd rather be dead. But that's no young man's option you've got things to do. I can't imagine what it takes to be you. No body knows 'cuz they just can't see. But we'll make them aware, eventually. Because there's too much hurting from this silent disease. It's time to turn our hopes into realities. Robbie can you hear me? You know it's gunna be alright. I think you're here to shine the light.
thefriendsbenefit 3 years ago
Without a doubt we're gunna work it out. Robbie can you hear me? You know they're bound to find a cure. And if our dream is premature just know, one fine day it's gunna be okay!
thefriendsbenefit 3 years ago
Thank you so much!
With Best Regards ;)
SofiyaRa 3 years ago
Such a crabby disease that I share with Robbie. Sorry someone so young has to go thru this aweful pain. Hope the shunt in his brain is helping him w/the pain.
Piratesmate60 3 years ago
i didn't kno they have to cut ur hair
FunnyGabbie 3 years ago
I have Pseudotumor cerebri and it hurts so bad u head is just like hurtin sooooooooooooooooo badly
FunnyGabbie 3 years ago
PTC
stinks
hbomb2704 3 years ago
I've been dealing with it for 1 1/2 years it's hard to know someone so young goes through what I do!!
PrincessT586 3 years ago
Thanks for sharing this I was just recently dx with IH and its a horrible thing to go through. God bless you.
Sammiiem 3 years ago
Here in the UK we call this illness Idiopathic Intracranial Hypertension. IIH really does suck. My 13 yr old suffers with it, was diagnosed September 07. She too is registered with the IHRF, we gotta find a cure for this. Great Song! thanks for sharing...
sunnybird 3 years ago