My 15 year daughter was diagnosed with IH just recently. It took numerous doctor visits and three trips to an ER at two different hospitals. I new something was not right and was very persistent! If I had not gone to the ER at a different Hospital and been so persistent my daughter would have most likely had permanent vision loss according to the ER Neurologist. Her opening pressure was 39. The worst part is the first ER we went too did a spinal tap and a cat scan but never checked the pressur
There are many clinical studies of non-invasive intracranial pressure measurement methods currently being implemented; I hope there won't be need of Lumber puncture anymore.
Hi, last month i found out i have this just before i almost died. The pressure in my head was over 70. I am 20 years old and i had to have the shunt put in my brain to save me from daily lumbar punctures. I never knew this existed until i started going blind after surgery my sight has been coming back slowly but surely. I don't know yet if there are things i wont be able to do which kind of scares me.
Hi. Great video! I'm having my second lumbar puncture done tomorrow under anesthesia after going onto shock during my first one. I'm on Acetazolamide and HCTZ, managing ok. I'm looking into alternatives like bariatric and endocrinology. I refuse to have a bad situation made worse by the shunting. I've been watching tons of vids and no one has anything positive to say after shunt surgery. That would be my last resort. It feels good to know that I'm not out here by myself.
You are not alone. I am coming up to my 11th month of having IIH, It took the doctors 8 months to finally diagnose me and in that time i was hospitalized twice. To date i have had 3 lumbar punctures... with opening pressures of 38, 49, and 39 in that order. Are you on Acetamalomide? thats what i am on but i get tingling sesnsatiosn in hands and feet and i hate it. Neurologist has mentioned the possibility of a shunt a few times but i am scared...i want this to stop...
I have PTC/IH. My MRI was normal, but my CT scan showed the excess fluid. I just started topamax. Are you on topamax or have you been? If so what was or is your experience with it? I have not had a LP yet, but my Neuro did make mention of one at my appt. today. He said he will see what course of action to take when I see him again in 2 weeks.
I just been dianosed with this but do I have to keep going through this again? Is still don't have an answer except that the white blood cells were too high and they couldn't get a pressure reading. Can I be put to sleep for them to do the Lumber pucture? I'm sorry I'm just not strong has most people and it just hurts too much to do more than once. In all I'm still scared.
@shirleysw21 It's okay to be scared, i am very scared by needles and i hated having lumbarpunctures. As long as you have a decent doctor doing the procedure you are fine..i have learnt that from experience. Sadly i have asked that question about being put to sleep to have the lumbar puncture done but the response i got was that it was too dangerous, there is the big risk of simply not awaking. You can get through this.
I have had IIH for over 10 years due to a head injury. I have a VP Shunt, but I still have daily headaches. I am a human barometer. I look forward to the time when I can be pain free, but I don't know when that will be. Sometimes I wish I could have a brain transplant. I would just like to have my life back.
hi. i just watched your video. i was just diagnosed on march 11,2011. its been a week. im still trying to find out something about it. but the doctors said the biggest thing for me is i have to lose weight or i will go blind soon. im only 21. my husbend and my family is standing by me. i would like to be apart of finding a cure for this.
I too was diagnosed on March 11, 2011! I've had headaches for 13 years. I've had numerous MRI's and all have shown nothing except for the one I had on March 3. I also had an MRV (shows veins, arteries, more in-depth), it showed that my brain has herniated. My Neurosurg is scheduling a stent placement within the next week. I'm a praying woman! I will be praying for all of you with this. Let's find a cure!
Hi. Just so happened to do a search for intercranial hypertension and came across your vid. I was diagnosed last year and it started with whiteouts in my vision. I've done some research on anemia and how it's connected to this condition. I have been taking Diamox and am now considered Lap Band to help with the weight loss. I admire you for going forward with the surgery. I will leave the shunt to my last resort. Lap Band surgery will be later this year.
In summer 2009 I developed horrible, debilitating headaches. I was nauseous and vomiting and couldn't do ANYTHING. I went to the doctor and after a baseline and secondary test, they told me I had papilledema caused by intracranial hypertension. I'm going for a spinal tap soon, what do they do? Everything about this is so scary.
@verlissa24 i'm havin a spinal tap done on oct 12 they said i had to lose weight. do u have vision of like square shapes with a dent on the left side and do u have trouble reading because thats what i got all the words look like its bending to the side. can u reply back to me and see if u have or had those symptoms
I have this as well my doc and I think we found a really good treatment, I would like you to try it, it worked for me. Oxygen and benadryl. If you want more info, please contact me at ashley.desrochers@yahoo.com. Hope you feel better soon!!!
I found out I had this in November '09. I had to have a spinal tap, and I felt a lot better. I was put on water pills, like Diamox. It was also causing me to have a papiladema of my optic nerve in my right eye. My last visit in May the doctor said that my vision was good but my optic nerve was still bulging a bit. So he said I most likely will have to have a shunt put in. However I am seeing a neuro- opthamologist in a couple of weeks. I'll see what she says.
@jackdaniels2085 Actually 30% of sufferers find that losing weight has no to little effect. Also, when your head is pounding, your ears of are ringing 24/7, you're vomiting left, right and centre, you've been banned from gyms for insurance reasons, you almost passed out swimming, and lose vision when you stretch, exercise just isn't going to happen.
Unless there's a way to lose weight with a healthy diet but no exercise.
I have this and am currently in the process of looking for a surgeon that will operate on me. I have been suffering since I was 9 years old but have only been diagnosed since November.
Hi nikkiblu78 I have the very same thing and it is now just hitting me i am so scarred bc they say you can have permanent vision loss from it. I have had to get injections in my eyes and have to go get my 2nd spinal tap tomorrow i hate this but i guess i just have to deal. Anyway I feel your pain and i hope for the best.
@hambocaz heya im having a LP next week, does it hurt?? im 13 year old female and they sed coz i got Benign intracranial hypertension, i need one and i cant get put to sleep PLEASE MESSAGE ME BACK ASAP!!!! =S
I have to have a lumbar puncture because i got this,.. im a 13 year old female and practically shittin myself cos i hate needles...especially 15 cm ones!!!!! :O :O :O :O :S :S :S :S
hey nikki i wantd to say thanks for this info.. i went in for an annual eye exam for contacts last week and came out w/ speudotumor cerebri..next wk im getn the spinal tab done... wish me luck.. Thanks so much
Update :- it has now been about 4 month since my two sergerys and im still having headaches .. i am going in for surgery # 3 on thus 10th Dec to have a programable shunt put in as my current one is not draining enough.. im still getting chronic pains in my ribs and shoulders from the shunt tubing touching nerves.. my Drs keep saying it will settle down eventually but 4 months is crazy ... i am going to demand they trim it when they open me up next week.
@nikkiblu78 hey i'm having a spinal tap done oct 12. they said i had to lose weight and they gave me pills till the spinal tap procedure is started. i wanna know did u have blurry visions like yo words leaning to the side or objects leaning to the side and blurry visions can u reply back and i hope yo surgery turns out well.
@nikkiblu78 - update .. i had the surgery for the programable shunt in dec 09 .. went well shunt lasted almost two years and the tube came undone ... so i have had surgery number 4 2 weeks ago .. fingers crossed i get more than 2 years out of this one ..
Hey guys, I know how all of you feel I have been diagnosed with Psuedotumour Cerebri for 10 years now and the pain in unbearable sometimes. I have had multiple lumbar punctures and have tried every medication out there, I hated how I felt on Diamox all the tingly feelings. I was told yesterday that I will be having the V and L shunts put in withing the next month. I am so scared if anyone can tell me about the procedure and where they go into and if there is any scarring please let me know.
Hey nikki, been watching out for an update from you... im sorry to hear youve still got the headaches n blurry vision after everything youve gone through... im currently having lumbar punctures done every so often.. thats all theyre doing for me as im 20 weeks pregnant but they dont seem to be working for me and they wont do anything else until ive had the baby. I know what a struggle it is to get through each day and the pain and fuzzyness in your head that never goes... hope u get better soon.
hello all , to give you an update, it has now been 6 weeks since i have my VP shunt put in and it was amazing for the first 3 weeks .. i was pain free and it was bliss.. then within 48 hours my headaches and blury vision came back, i went to the hospital to get scans and within 24 hours i was having emergency surgery as the tubing had been sucked into one of my vains and wrapped around my heart, so after the second surgery i feel a bit better but still get headaches and blurry vision .. :(
well fun and games, just got out of hospital as i had terrible headaches and needed pain relief. i saw my neurologist and have had my mri and lumbar puncuture, which had to be done with ultrasound guidance after 2 failed attempts. was very very painful and my back is aching to hell still, but worth it as no headaches since :) they said my pressure was 38 and have brought it down to 19 and have put me on medication. waiting to go back to nuerologist to disscuss what happens in the future??
I went to the eye clinic last thursday, were they have discovered i have pressure on the brain :( i am having at mri scan on wednesday to rule out anything else. i am completely terrified and stressed out. my doctor cant give me anything more than diploflex for the pain until they know what id causing the pressure and i am in agony with a bad headache that's at the back of my head that goes down mt neck. think ur video is great and would appreciate any help or info on this condition :)
I had this conditon 15 years ago, I had the same experience, I went to get my eyes checked also, they told me I had to get a cat scan immedialely, so I did. Also seen a Neurologist who told me this was what I had and needed a series of lumbar punctures, I was terrified too. I had two small children at the time. But, I got through it, had lots of support from family and friends, and now rarely get any headaches, my eyesights improved too. So try not to stress over it too much. Take Care!
Although on prescription drugs my wifes blood pressure remainder at the top end of normal. After taking Levodyn for three months the improvement has been significant and she intends to carry on with Levodyn as a really helpful supplement.
Our prayers for you Shane. You are precious and significant to God/Christ. Keep seeking. I know that sounds so trite and superficial but please know that Christ Jesus knows and understands what you're going through. Our prayers Shane.
Always remember you are precious in God's sight. Thank you for sharing your experience. . I think you understand SO many important things that many or even most adults do not understand. May God's Love, Truth, Peace and Strength minister to you in Christ Jesus
Hello Everyone, Thank you for your comments , i have updated the Info section to the right and listed some of the main Symptoms if you think you have these please see your Dr .
Also to give you an update im having a VP shunt incerted next thus so i will update some videos very soon.
Yes I feel your pain. I have IH. but I just keep going. I take my Diamox and an Abilify for the depresive side effects of diamox. I try not to think of IH. But when I finally stop and think about it it scares the crap out of me.
I've had PTC/BIH/IH since 1991. I've had 4 LP shunts, they all failed, and 3 optic nerve sheath fenestrations that helped prolong my vision briefly. I am now completely disabled and legally blind, and since I'm allergic to the meds they use to help treat the disease, the only treatment left for me is pain management with high dose morphine. It takes the edge off but never rids me of the pain entirely. The only true escape from PTC brain pain is if you can sleep thru it...IF you can fall asleep!
I'm a lesbian too, nice to meet you! We all have strong wills, and the ability to take on a lot of pain and despair, but sometimes the pain becomes so severe as the disease worsens over the years that it can ruin many aspects of ones life. I know the loved ones of the victims suffer the most because the victims are strong and try to shield their loved ones from the true pain they suffer. PTC causes retractable headache, meaning no pain meds can relieve the pain. I'm on morphine and still hurt!
You've been terribly misinformed KeVin85. PTC can be fatal for those of us who have the more rare and chronic version. It can cause brain stem herniation, stroke, cerebral hemorrhage and many other neurological events, and this was told to me by one of the worlds leading neurosurgeons. I;ve had this since 1991, I'm legally blind, disabled by he pain and even morphine doesn't stop the pain. I've had 3 optic nerve sheath fenestrations, 4 shunts, and am allergic to PTC meds. It's a VERY BIG DEAL!!!
gday, yes it is a overproduction of spinal fluid with no cause and no cure yet, the only way to release the pressure is draining it through a lumbar puncture. last year i was getting them every 2-3 weeks but this year i have been meditating everynight to releive the headaches .. it sounds silly but i have only needed one LP this year so that ia amazing for me... i can feel the pressure starting to build up the last few weeks and i know i will need one very soon. but 1 in 3 months is great... :)
I just had my first visit with the neurologist today. I've had a CT Scan and a neck x-ray and they're scheduling me for an MRI and MRA soon. The docs seem to think this is what I have, but they're not sure yet. I came on YT looking for videos of the lumbar puncture because they said it's likely I'll have to have one and I'm terrified of it. Ugh. Thanks for sharing your story with us. Looks like I might be in for quite the rough road.
this video is very moving, i'm 16 and i have lost half of my sight due to IH, it's great to know that others are being educated about it as well thank you for making this video to give them an idea about what is going on x
thank you sophnana, im glad i can be a voice to help other get through it and to raise awareness. i wish you all the best.. xo be brave and continue to shine your sunshine to those around you... im sure there will be a cure one day...
I received my VP shunt on 1/20/09 and a revision on 1/22/09. Thanks for your education for others and encouraging spirit. I am struggling, but with faith in God, I know I, you, and all others with IH/PTC will pull through. God Bless You!
Thank you for your message, i made this movie to try to explain to friends and family what BIH is all about ....
Taken from the IH website, "Idiopathic intracranial hypertension is sometimes also called primary intracranial hypertension. (Benign intracranial hypertension, like pseudotumor cerebri, is another older term for IIH" It may be the older term used in Americia but this is the main name used here in Australia,
there is harly any info out there on IH or BIH so the more out there the better ... what are your other 4 things ? i bet one is me saying your normal pressure is 5-10 .. well everyone has a different opionion on that. the IH site say you have it when you reach pressure of 25 my neuro surgeon (one of Australias best ) says your pressure should not be over 10. interested to hear your thoughts .
that is great that BIH dose not effect you that badly, some people do have huge symptoms that DO EFFECT their life, Just like a bee sting is just a bee sting to one person - but a bee sting can also kill a person that is allergic.
BIH can send some people blind so i think it a big deal, im just grateful that you have only been blessed with only mild effects, but please dont discredit how others live with it.
can this appear like rapdily? or does this appear slowly?
beaman3068 2 months ago
My 15 year daughter was diagnosed with IH just recently. It took numerous doctor visits and three trips to an ER at two different hospitals. I new something was not right and was very persistent! If I had not gone to the ER at a different Hospital and been so persistent my daughter would have most likely had permanent vision loss according to the ER Neurologist. Her opening pressure was 39. The worst part is the first ER we went too did a spinal tap and a cat scan but never checked the pressur
mwynfam1 3 months ago
TRY HYPERBARIC OXYGEN THERAPY FOR THIS DISEASE
SuperDelta000 5 months ago
There are many clinical studies of non-invasive intracranial pressure measurement methods currently being implemented; I hope there won't be need of Lumber puncture anymore.
brainsafe1 6 months ago
Hi, last month i found out i have this just before i almost died. The pressure in my head was over 70. I am 20 years old and i had to have the shunt put in my brain to save me from daily lumbar punctures. I never knew this existed until i started going blind after surgery my sight has been coming back slowly but surely. I don't know yet if there are things i wont be able to do which kind of scares me.
tealoctane 7 months ago
@tealoctane I hope you're ok and getting better.
orbital92hotmail 4 months ago
Hi. Great video! I'm having my second lumbar puncture done tomorrow under anesthesia after going onto shock during my first one. I'm on Acetazolamide and HCTZ, managing ok. I'm looking into alternatives like bariatric and endocrinology. I refuse to have a bad situation made worse by the shunting. I've been watching tons of vids and no one has anything positive to say after shunt surgery. That would be my last resort. It feels good to know that I'm not out here by myself.
LadieElegance 7 months ago
We need more awareness like this. We suffer everyday and it's about time people realised what an awful condition this is!
elderwand08 7 months ago
You are not alone. I am coming up to my 11th month of having IIH, It took the doctors 8 months to finally diagnose me and in that time i was hospitalized twice. To date i have had 3 lumbar punctures... with opening pressures of 38, 49, and 39 in that order. Are you on Acetamalomide? thats what i am on but i get tingling sesnsatiosn in hands and feet and i hate it. Neurologist has mentioned the possibility of a shunt a few times but i am scared...i want this to stop...
vampirebabe2009 7 months ago
You're not alone & either am I! Thank you for putting this together - will pass it on! -3
Debbiehere11 9 months ago
I have PTC/IH. My MRI was normal, but my CT scan showed the excess fluid. I just started topamax. Are you on topamax or have you been? If so what was or is your experience with it? I have not had a LP yet, but my Neuro did make mention of one at my appt. today. He said he will see what course of action to take when I see him again in 2 weeks.
pris72 10 months ago
I just been dianosed with this but do I have to keep going through this again? Is still don't have an answer except that the white blood cells were too high and they couldn't get a pressure reading. Can I be put to sleep for them to do the Lumber pucture? I'm sorry I'm just not strong has most people and it just hurts too much to do more than once. In all I'm still scared.
shirleysw21 10 months ago
@shirleysw21 It's okay to be scared, i am very scared by needles and i hated having lumbarpunctures. As long as you have a decent doctor doing the procedure you are fine..i have learnt that from experience. Sadly i have asked that question about being put to sleep to have the lumbar puncture done but the response i got was that it was too dangerous, there is the big risk of simply not awaking. You can get through this.
vampirebabe2009 7 months ago
I have this and it has blighted my life in ways i can't even begin to describe....
elderwand08 10 months ago
Hi..so i have several symptoms..i just got my MRI done yesterday 5/3/11.. and i get my results 5/13/11
sharnella12 10 months ago
I have had IIH for over 10 years due to a head injury. I have a VP Shunt, but I still have daily headaches. I am a human barometer. I look forward to the time when I can be pain free, but I don't know when that will be. Sometimes I wish I could have a brain transplant. I would just like to have my life back.
debcripps 11 months ago
hi. i just watched your video. i was just diagnosed on march 11,2011. its been a week. im still trying to find out something about it. but the doctors said the biggest thing for me is i have to lose weight or i will go blind soon. im only 21. my husbend and my family is standing by me. i would like to be apart of finding a cure for this.
deedraann89 1 year ago
@deedraann89
I too was diagnosed on March 11, 2011! I've had headaches for 13 years. I've had numerous MRI's and all have shown nothing except for the one I had on March 3. I also had an MRV (shows veins, arteries, more in-depth), it showed that my brain has herniated. My Neurosurg is scheduling a stent placement within the next week. I'm a praying woman! I will be praying for all of you with this. Let's find a cure!
CrazeeAunt 10 months ago
Thanks for submitting. I know we can make a difference.
fourlonglostfriends 1 year ago
Hi. Just so happened to do a search for intercranial hypertension and came across your vid. I was diagnosed last year and it started with whiteouts in my vision. I've done some research on anemia and how it's connected to this condition. I have been taking Diamox and am now considered Lap Band to help with the weight loss. I admire you for going forward with the surgery. I will leave the shunt to my last resort. Lap Band surgery will be later this year.
LadieElegance 1 year ago
In summer 2009 I developed horrible, debilitating headaches. I was nauseous and vomiting and couldn't do ANYTHING. I went to the doctor and after a baseline and secondary test, they told me I had papilledema caused by intracranial hypertension. I'm going for a spinal tap soon, what do they do? Everything about this is so scary.
audreylynnshepherd 1 year ago
Oh and I have also lost part of my vision
audreylynnshepherd 1 year ago
@verlissa24 i'm havin a spinal tap done on oct 12 they said i had to lose weight. do u have vision of like square shapes with a dent on the left side and do u have trouble reading because thats what i got all the words look like its bending to the side. can u reply back to me and see if u have or had those symptoms
thevillain091 1 year ago
I have this as well my doc and I think we found a really good treatment, I would like you to try it, it worked for me. Oxygen and benadryl. If you want more info, please contact me at ashley.desrochers@yahoo.com. Hope you feel better soon!!!
Oneluck13 1 year ago
I found out I had this in November '09. I had to have a spinal tap, and I felt a lot better. I was put on water pills, like Diamox. It was also causing me to have a papiladema of my optic nerve in my right eye. My last visit in May the doctor said that my vision was good but my optic nerve was still bulging a bit. So he said I most likely will have to have a shunt put in. However I am seeing a neuro- opthamologist in a couple of weeks. I'll see what she says.
4SCARECROWS 1 year ago
losing weight is the best cure for Ih
jackdaniels2085 1 year ago
@jackdaniels2085 Actually 30% of sufferers find that losing weight has no to little effect. Also, when your head is pounding, your ears of are ringing 24/7, you're vomiting left, right and centre, you've been banned from gyms for insurance reasons, you almost passed out swimming, and lose vision when you stretch, exercise just isn't going to happen.
Unless there's a way to lose weight with a healthy diet but no exercise.
TheFallenaingael 1 year ago
I have this and am currently in the process of looking for a surgeon that will operate on me. I have been suffering since I was 9 years old but have only been diagnosed since November.
krystalebeth 1 year ago
im 16 and have been having these symptoms for 2 years. the doctors kept pawning me off on pills and saying it was somatoform dissorder.
now they know its BIH im having a spinal tap.
im really scared but im willing to do anything to get rid of the pain :(
its just not fair to be honest, nobody understands what were going through. i fully support raising awareness.
Lozzayy13 2 years ago
Hi nikkiblu78 I have the very same thing and it is now just hitting me i am so scarred bc they say you can have permanent vision loss from it. I have had to get injections in my eyes and have to go get my 2nd spinal tap tomorrow i hate this but i guess i just have to deal. Anyway I feel your pain and i hope for the best.
lolitarose111 2 years ago
i got this, im 13 had 4 lumbar punctures in 2 days.
gh3rules1353 2 years ago
@hambocaz Thank you so much,...you're amazing.once again thank you so much - have a good christmas,!! Kind reguards, gh3rules1353 (Shanna)
gh3rules1353 2 years ago
@hambocaz heya im having a LP next week, does it hurt?? im 13 year old female and they sed coz i got Benign intracranial hypertension, i need one and i cant get put to sleep PLEASE MESSAGE ME BACK ASAP!!!! =S
gh3rules1353 2 years ago
I have to have a lumbar puncture because i got this,.. im a 13 year old female and practically shittin myself cos i hate needles...especially 15 cm ones!!!!! :O :O :O :O :S :S :S :S
gh3rules1353 2 years ago
hey nikki i wantd to say thanks for this info.. i went in for an annual eye exam for contacts last week and came out w/ speudotumor cerebri..next wk im getn the spinal tab done... wish me luck.. Thanks so much
latinapanama22 2 years ago
Update :- it has now been about 4 month since my two sergerys and im still having headaches .. i am going in for surgery # 3 on thus 10th Dec to have a programable shunt put in as my current one is not draining enough.. im still getting chronic pains in my ribs and shoulders from the shunt tubing touching nerves.. my Drs keep saying it will settle down eventually but 4 months is crazy ... i am going to demand they trim it when they open me up next week.
nikkiblu78 2 years ago
@nikkiblu78 hey i'm having a spinal tap done oct 12. they said i had to lose weight and they gave me pills till the spinal tap procedure is started. i wanna know did u have blurry visions like yo words leaning to the side or objects leaning to the side and blurry visions can u reply back and i hope yo surgery turns out well.
thevillain091 1 year ago
@nikkiblu78 - update .. i had the surgery for the programable shunt in dec 09 .. went well shunt lasted almost two years and the tube came undone ... so i have had surgery number 4 2 weeks ago .. fingers crossed i get more than 2 years out of this one ..
nikkiblu78 3 months ago
Praying for you girl... who sings that song? I am Kylies mom u posted a conemmt on her youtube thing alsoQ
joshuankarli 2 years ago
Hey guys, I know how all of you feel I have been diagnosed with Psuedotumour Cerebri for 10 years now and the pain in unbearable sometimes. I have had multiple lumbar punctures and have tried every medication out there, I hated how I felt on Diamox all the tingly feelings. I was told yesterday that I will be having the V and L shunts put in withing the next month. I am so scared if anyone can tell me about the procedure and where they go into and if there is any scarring please let me know.
canadianangel1979 2 years ago
Hey nikki, been watching out for an update from you... im sorry to hear youve still got the headaches n blurry vision after everything youve gone through... im currently having lumbar punctures done every so often.. thats all theyre doing for me as im 20 weeks pregnant but they dont seem to be working for me and they wont do anything else until ive had the baby. I know what a struggle it is to get through each day and the pain and fuzzyness in your head that never goes... hope u get better soon.
sarkibirdx 2 years ago
hello all , to give you an update, it has now been 6 weeks since i have my VP shunt put in and it was amazing for the first 3 weeks .. i was pain free and it was bliss.. then within 48 hours my headaches and blury vision came back, i went to the hospital to get scans and within 24 hours i was having emergency surgery as the tubing had been sucked into one of my vains and wrapped around my heart, so after the second surgery i feel a bit better but still get headaches and blurry vision .. :(
nikkiblu78 2 years ago
Did the doctor mention why you have headache and blurry vision? have you did CT scan?
doctormoo 2 years ago
Hey Auntie Nikki, the video is AWSOME!!
Anyway whats the song, coz I really like it and would like to get it??
Love you, and hope all goes well!!
Cootarlaneah 2 years ago
well fun and games, just got out of hospital as i had terrible headaches and needed pain relief. i saw my neurologist and have had my mri and lumbar puncuture, which had to be done with ultrasound guidance after 2 failed attempts. was very very painful and my back is aching to hell still, but worth it as no headaches since :) they said my pressure was 38 and have brought it down to 19 and have put me on medication. waiting to go back to nuerologist to disscuss what happens in the future??
emmaloulou26 2 years ago
I went to the eye clinic last thursday, were they have discovered i have pressure on the brain :( i am having at mri scan on wednesday to rule out anything else. i am completely terrified and stressed out. my doctor cant give me anything more than diploflex for the pain until they know what id causing the pressure and i am in agony with a bad headache that's at the back of my head that goes down mt neck. think ur video is great and would appreciate any help or info on this condition :)
emmaloulou26 2 years ago
I had this conditon 15 years ago, I had the same experience, I went to get my eyes checked also, they told me I had to get a cat scan immedialely, so I did. Also seen a Neurologist who told me this was what I had and needed a series of lumbar punctures, I was terrified too. I had two small children at the time. But, I got through it, had lots of support from family and friends, and now rarely get any headaches, my eyesights improved too. So try not to stress over it too much. Take Care!
20cher09 2 years ago
Although on prescription drugs my wifes blood pressure remainder at the top end of normal. After taking Levodyn for three months the improvement has been significant and she intends to carry on with Levodyn as a really helpful supplement.
litebug12345 2 years ago
you mean CSF pressure?.
Draziom203 2 years ago
Our prayers for you Shane. You are precious and significant to God/Christ. Keep seeking. I know that sounds so trite and superficial but please know that Christ Jesus knows and understands what you're going through. Our prayers Shane.
ColonialPetersen 2 years ago
Always remember you are precious in God's sight. Thank you for sharing your experience. . I think you understand SO many important things that many or even most adults do not understand. May God's Love, Truth, Peace and Strength minister to you in Christ Jesus
ColonialPetersen 2 years ago
Hello Everyone, Thank you for your comments , i have updated the Info section to the right and listed some of the main Symptoms if you think you have these please see your Dr .
Also to give you an update im having a VP shunt incerted next thus so i will update some videos very soon.
nikkiblu78 2 years ago
I've got this and a tumor... does anyone else think that's an oxymoron???
banconformity432 2 years ago
I know what you are going through. I can't take Diamox. Nothing helps. I do what I can day by day! I love your video!
ALPRG 2 years ago
Yes I feel your pain. I have IH. but I just keep going. I take my Diamox and an Abilify for the depresive side effects of diamox. I try not to think of IH. But when I finally stop and think about it it scares the crap out of me.
Abutterfly381 2 years ago
I've had PTC/BIH/IH since 1991. I've had 4 LP shunts, they all failed, and 3 optic nerve sheath fenestrations that helped prolong my vision briefly. I am now completely disabled and legally blind, and since I'm allergic to the meds they use to help treat the disease, the only treatment left for me is pain management with high dose morphine. It takes the edge off but never rids me of the pain entirely. The only true escape from PTC brain pain is if you can sleep thru it...IF you can fall asleep!
MamaLeece 2 years ago
I'm a lesbian too, nice to meet you! We all have strong wills, and the ability to take on a lot of pain and despair, but sometimes the pain becomes so severe as the disease worsens over the years that it can ruin many aspects of ones life. I know the loved ones of the victims suffer the most because the victims are strong and try to shield their loved ones from the true pain they suffer. PTC causes retractable headache, meaning no pain meds can relieve the pain. I'm on morphine and still hurt!
MamaLeece 2 years ago
You've been terribly misinformed KeVin85. PTC can be fatal for those of us who have the more rare and chronic version. It can cause brain stem herniation, stroke, cerebral hemorrhage and many other neurological events, and this was told to me by one of the worlds leading neurosurgeons. I;ve had this since 1991, I'm legally blind, disabled by he pain and even morphine doesn't stop the pain. I've had 3 optic nerve sheath fenestrations, 4 shunts, and am allergic to PTC meds. It's a VERY BIG DEAL!!!
MamaLeece 2 years ago
i understand you pain ... just remember you are not alone in this..... i wish you all the best xo
nikkiblu78 2 years ago
gday, yes it is a overproduction of spinal fluid with no cause and no cure yet, the only way to release the pressure is draining it through a lumbar puncture. last year i was getting them every 2-3 weeks but this year i have been meditating everynight to releive the headaches .. it sounds silly but i have only needed one LP this year so that ia amazing for me... i can feel the pressure starting to build up the last few weeks and i know i will need one very soon. but 1 in 3 months is great... :)
nikkiblu78 2 years ago
I just had my first visit with the neurologist today. I've had a CT Scan and a neck x-ray and they're scheduling me for an MRI and MRA soon. The docs seem to think this is what I have, but they're not sure yet. I came on YT looking for videos of the lumbar puncture because they said it's likely I'll have to have one and I'm terrified of it. Ugh. Thanks for sharing your story with us. Looks like I might be in for quite the rough road.
agentaeon 3 years ago
this video is very moving, i'm 16 and i have lost half of my sight due to IH, it's great to know that others are being educated about it as well thank you for making this video to give them an idea about what is going on x
sophnlana1234 3 years ago
thank you sophnana, im glad i can be a voice to help other get through it and to raise awareness. i wish you all the best.. xo be brave and continue to shine your sunshine to those around you... im sure there will be a cure one day...
nikkiblu78 2 years ago
I received my VP shunt on 1/20/09 and a revision on 1/22/09. Thanks for your education for others and encouraging spirit. I am struggling, but with faith in God, I know I, you, and all others with IH/PTC will pull through. God Bless You!
prescriptionmom 3 years ago
Thank you for your message, i made this movie to try to explain to friends and family what BIH is all about ....
Taken from the IH website, "Idiopathic intracranial hypertension is sometimes also called primary intracranial hypertension. (Benign intracranial hypertension, like pseudotumor cerebri, is another older term for IIH" It may be the older term used in Americia but this is the main name used here in Australia,
nikkiblu78 3 years ago
there is harly any info out there on IH or BIH so the more out there the better ... what are your other 4 things ? i bet one is me saying your normal pressure is 5-10 .. well everyone has a different opionion on that. the IH site say you have it when you reach pressure of 25 my neuro surgeon (one of Australias best ) says your pressure should not be over 10. interested to hear your thoughts .
Nikki
nikkiblu78 3 years ago
that is great that BIH dose not effect you that badly, some people do have huge symptoms that DO EFFECT their life, Just like a bee sting is just a bee sting to one person - but a bee sting can also kill a person that is allergic.
BIH can send some people blind so i think it a big deal, im just grateful that you have only been blessed with only mild effects, but please dont discredit how others live with it.
All the best
NikkiBlu
nikkiblu78 3 years ago
=( i have ih too. you'll be in my prayers
PretzeltiniProd 3 years ago
Thanks so much! What a great video. I have IH and I am part of the foundation as well. It feels so good, not to feel alone in all this. I am scared!
amandasisgirl 3 years ago