Intracranial Hypertension – BIH
http://nikkiblu-bih.blogspot.com I have Intracranial hypertension- a brain disease that has no cause and no Cure YET… help me raise awareness and together we can find a cure… visit my blog and share this video with your loved ones and your Doctors…
Some symptoms –
Numb toes, feet and fingers while lying in bed. Pins and needles as well.
Pressure behind eyes, eyes tearing.
Visual disturbances.
Feeling of pressure in head, feels like my brain is being squashed
Forgetting words, little one’s like pen.
Loss of short-term memory – what I am doing, where am I?
Vertigo, loss of balance with eyes shut.
Tailbone aches for hours/days.
Back of neck aches.
Headache, 24 hours a day.
Migraines on a regular basis.
Double vision
Thrumming noise in ears (actually the sound of my own heartbeat).
Lethargy that lasted months.
Visual blackout that lasts several seconds after standing up.
Dizziness on standing/squatting.
Eyelid twitching, small mini seizures involving arm, leg or head movement.
Dry mouth.
Water retention – fat , sore feet
Weight gain.
Night blindness.
Non-thought, when you try to think through a head full of cotton wool.
Feeling of disorientation/confusion.
If you have more than 3 of these Symptoms please see your Doctor and ask for a refferal to see a Neurologist (study’s the brain) or ophthalmologist (who will be able to look into your eyes and see the pressure on your optic nerves). The only way that IH can be ditected is from a lumber Puncture the needle in your spine is hooked up to a tube and is held vertical and the pressuse from the fluid will rise the fluid up the tube giving you a pressure reading. normal is 5-10 my first reading was 28 (3 times normal levels) and has been as high as 48.
If your doctor is not aware of this disease and is dismissing your symptoms see another Dr.. this is your body and you must take charge of it.
Duration : 0:1:54
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August 14th, 2009 at 7:15 pm
Hi there. I have …
Hi there. I have ideopathic intracranial hypertension. I was diagnosed at age 19 and I have a VP shunt. It has worked wonders for me. I also have Multple Scerlosis but I have been very lucky with the shunt. It has been a blessing. The majority of my difficulties these days are from the MS. I do feel a close bond to all of you because I understand all too well the pain of spinal taps, taking the lovely water pills. I will pray for your sucess as well. – We need to find a cure for this!!
August 14th, 2009 at 7:15 pm
Hello Everyone, …
o 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.
August 14th, 2009 at 7:15 pm
I’ve got this and a …
I’ve got this and a tumor… does anyone else think that’s an oxymoron???
August 14th, 2009 at 7:15 pm
I was wondering if …
I was wondering if someone could tell me if my symptoms are typical of ICP. I’ve had pressure on my temples for about 3 yrs constantly without relief, its ruined my life and i’ve tried a lot of things. i’ve never gotten an mri because of expense but could this be a sign. depression, anxiety and of course the pain, no doctor has diagnosed this yet and my chiropractor told me that it could not be spinal fluid because me riding on an airplane would have killed me….which i did..
August 14th, 2009 at 7:15 pm
I know what you are …
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!
August 14th, 2009 at 7:15 pm
Yes I feel your …
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.
August 14th, 2009 at 7:15 pm
One of my friends I …
One of my friends I met in hospital died of IIH it even said so on his death certificate,so knowbody should take this as a `minor`illness!
Everybody is different,some people don`t even know they have IIH until they visit the opticans,some people even manage to still hold down a job,but there are loads of people crying out for a proper cure that focus on IIH itself and not just popping pills that where designed for something else(Diamox)anybody?
To all fellow sufferers,have a headache free day.
August 14th, 2009 at 7:15 pm
I’ve had PTC/BIH/IH …
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!
August 14th, 2009 at 7:15 pm
I’m a lesbian too, …
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!
August 14th, 2009 at 7:15 pm
You’ve been …
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!!!
August 14th, 2009 at 7:15 pm
i understand you …
i understand you pain … just remember you are not alone in this….. i wish you all the best xo
August 14th, 2009 at 7:15 pm
thank you sophnana, …
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…
August 14th, 2009 at 7:15 pm
gday, yes it is a …
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…
August 14th, 2009 at 7:15 pm
So what are they …
So what are they reating you with? Weekly CSF drain and daily mannitol shots? lol the cause is the overproduction of CSF no?
August 14th, 2009 at 7:15 pm
Hi.
I too have …
Hi.
I too have Intracranial hypertension, have had so many lumbar punctures & serious health complications too. Been so many times to hospital, have lost count now lol. : )
August 14th, 2009 at 7:15 pm
I just had my first …
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.
August 14th, 2009 at 7:15 pm
this video is very …
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
August 14th, 2009 at 7:15 pm
I received my VP …
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!
August 14th, 2009 at 7:15 pm
there is harly any …
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
August 14th, 2009 at 7:15 pm
Thank you for your …
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,
August 14th, 2009 at 7:15 pm
Let me first say …
Let me first say that this video is very moving and I love it. I have IH and applaud you for taking the time to make this. I really want to share it with people except that there are a few things factually wrong with it. Please do not take offense to my comments as I just want information out there to be factual and correct. There are 5 things that I would like to bring to your attention.
First is IH is not called BIH anymore. That is an old name. That information is on the IHRF website.
August 14th, 2009 at 7:15 pm
Hi im the partner …
Hi im the partner of the girl that posted the comment firstly
hi
she states tat bih doesnt affect her so badley but as a second party i can tell you that it does she is just an amazingly strong willed person and she refuses to let it bother her
when she had the operations last april she was so calm and relaxed all the way through it all but i guess thats part of it all? the artners do mot of the worrying? hehe
good luck with the foundation guys take care
August 14th, 2009 at 7:15 pm
that is great that …
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
August 14th, 2009 at 7:15 pm
dunno whether its …
dunno whether its just me or not but i have it and its never been that much of a big deal its not life threatening etc. although yea it can be really painful and frustrating it’s ok for me i manage to cope. people make out its awful sometimes but i just dont see how. ah well.
August 14th, 2009 at 7:15 pm
=( i have ih too. …
=( i have ih too. you’ll be in my prayers