health information
Intracranial Hypertension – BIH
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 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 . . .
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#3 written by robertsonamanda921 2 years ago
Your video is fantastic. I was diagnosed with IH after suffering with a constant headache for three years For two and a half years it was treated as a migraine. Since, I have LPs every 2-3 weeks due to the pressure, mine gets high enough to cause brain damage and seizures. There is not much information on IH out there, so thanks for helping raise the awareness and for expressing our mutual struggle so eloquently.
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#4 written by 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 
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#5 written by britann1 2 years ago
I have recently been diagnosed with this condition as well. I am supposed to have a lumbar puncture on Friday so I am laying awake scared of what will come next. I am REALLY scared to have a lumbar puncture because I have heard that they are really painful and I HATE needles. This helped ease me a little bit to know that others fight this same thing everyday!
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#6 written by emmaloulou26 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?? -
#7 written by 20cher09 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!
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#8 written by hambocaz 2 years ago
Thanks for this nice to see other people dealing with it. I was diagnosed 3 years ago. Had an LP after 3 days at 2 & 1/2 hour sittings it was successful. Helped my headaches but made my vision bad. Had another LP a week later and was told i needed a shunt fitting otherwise i would lose my sight within 2 days. All was well but still get migrane every day. Had another LP today so see what happens but hoping my future can be pain free…. but i doubt it. Thanksyou for making awareness
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#10 written by nikkiblu78 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 ..
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#12 written by sarkibirdx 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.
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#13 written by verlissa24 2 years ago
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#14 written by canadianangel1979 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.
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#16 written by nikkiblu78 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.
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#21 written by hambocaz 2 years ago
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#24 written by lolitarose111 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.
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#25 written by Lozzayy13 2 years 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. - Comment Feed for this Post
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.