Idiopathic Intracranial Hypertension :: Optic Nerves Were Swollen
Mar 2, 2015
I was diagnosed 3 years ago and recently spent a week in hospital due to a headache not moving my eyesight went with it this time for the first time ever and I was driving with my 7 year old in the car it really scared me yet I had a lumbar puncture pressure was only 24 but my speech has been effected my eyes keep blurring this headache has been here for 10 days now and still no budge when I was in hospital they said both my optic nerves were swollen and I seen my neurologist today and he says it's just a migraine. The first 4 attempts at lumbar puncture they did in the wrong place so was unsuccessful and have left me in agony can anyone suggest what I can do I am not overly obese but all's my specialist says is lose weight they will stop
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have had intracranial hypertension for 7 years i am coping well at the moment with the diamox tablets 25omg 3 times a day and i go into hospital every 6 months for lumbar punctures.i did go away 3 years ago but returned a year later worse but controllable.there is light at the end of the tunnel and i do get a lot of other symtoms but i just try and deal with it even though sometimes its hard i am 43 now.
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My 12 year old daughter had had headaches for some time and her endocrinologist advised her to have an eye test. I say 'endocrinologist' as she was born without a thyroid gland (extremely rare) and she's been taking thyroxine since she was 10 days old. She's also monitored for her hypothyroidism. Anyway, between her doctor's appt and her eye test, she got her first period. So we blamed her headaches on her development. The ophthalmologist said that my daughter needed to increase her lenses. So again, we put her headaches down to this. By time, her headaches moved down to her neck and 4 months later, at another routine eye test, I mentioned this and the ophthalmologist decided to look behind her eyes. He was horrified to see extreme swelling of both optic nerves and a swollen brain. She was admitted into hospital and had a CT Scan done. Luckily there were no tumours but a lumbar puncture showed that her CSF pressure was 50 (it should be 15-18). She was immediately started on diamox 250mg (acetazolamide). After a few days this dose doubled. Today she has just had her 6th lumbar puncture and as the pills don't seem to be working - her CSF pressure is on the rise again, her medication has been increased again. She's taking 2g per day (750mg-500mg-750mg) daily, which i think is too much for a child. On the 23rd July she's having her 7th lumbar puncture and also seeing a neurosurgeon, because inserting a shunt seems to be the only solution. Lets hope and pray all will be ok.
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About 3 months ago I had a sinus infection and never recovered after I had terrible like pressure building up in the left side of my head which would happen more at night or basically when I would lie down i also when my ears touch the pillow I hear my pulse and on the right ear only when I press against the pillow a clicking noise I would later develop sensitivity to bright lights sounds and smells.
I made 3 trips to a and e with the pressure building in my head on the last occasion it affected the left side of my body they just sent me away
I payed private for a neurologist did MRI on brain came back fine he diagnosed me with severe migraines and put me on propanol these have calmed the symptoms but I am worried as I am still left with a dull pulsating on the left side and have a bit of blurred vision suffer a lot with fatigue and when I try to exercise it kind makes my head
worse and I have noticed pain in my neck and shoulder on the left side had my eyes tested but said they were fine .
The thing is I am left with is like a dull pulsating on the left side with still sensitivity to light no energy I am not sure if this is chronic migraines just wondered of anyone had any ideas to what it could be I have been better since taking the medication but it worrying that it's kind of still there I also have irritable bladder and ibs and have been referred to a chronic fatigue clinic but I don't think that is the cause of my fatigue
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For over a year I have been suffering with idiopathic intracranial hypertension which ended up with me needing a stent inserted earlier this year. I have been left with horrendous headaches which has now been diagnosed as chronic daily migraines. My consultant has now suggested the following plan; reduce caffeine to zero (only drink 3 cups of tea a day anyway), no cheese chocolate or red wine (don't eat or drink these anyway). Propranolol beta blocker as preventative. Sumatriptan, Aspirin and Domperidone as acute attacks rescue plan. He also put me on waiting list for nerve block injections.
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I was diagnosed in October 2006, after been admitted to Hospital with suspected Meningitis. They did a Lumbar Puncture, and the CSF pressure was very high, I was shipped out to a Hospital in Sheffield - Away from Uni, and even further away from family.
It was confirmed I had BIH.
Ever since, I've had to have Lumbar Punctures every 6-8 weeks, with the CSF always way too high. I was put on Diamox too, which didn't do anything at all. I'm now on Topiramate (Topamax), which also doesn't work for me.
I thought it was just people around me deliberately not understanding how painful and disabling it is, but after reading your experiences, it seems not many people understand.
Woke up this morning in pain (like most days), with dodgy vision and loss of coordination, so time for another LP!
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I am a fit, healthy 28 year old guy who has spontaneously developed severe high blood pressure, temporal pressure headaches, dizzy spells and blocked ears. The symptoms vary, with acute periods lasting a couple hours and occurring on a weekly basis. Generally an acute period is characterized by severe headaches, needing to lie down, blocked ears and extreme lethargy.
I have had CT’s and MRI’s of the brain and cervical spine, PET scans, ECHO’s, a multitude of blood tests and various other tests with no abnormalities.
I gym 4 times a week, eat healthy and work as a hairdresser, so my lifestyle is pretty healthy overall.
This condition is starting to limit my lifestyle and with two years of no answers I am putting it out there for someone to recognize or provide advice about what could potentially be going on!
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I went and do a check up on my eyes and the optic nerves in my eyes is swollen ...I did a CT scan and the results was clean...so I want to know what causes the swelling.
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The Drs thought I had Pseudotumor Cerebri, since my optic nerves have in swollen since Oct 2013. I had a MRI and Spinal tap. Found out my pressure was too low. But they found oligoclonal bands in my CSF. BUT concluded not enough evidence for MS. I have many symptoms of MS. My leg has been numb and burning in my thigh all day. Has anyone experienced their optic nerves swollen with MS? I'm not talking about inflammation in the nerves just swollen. Worried about going blind and trying to figure out what's wrong. I'm waiting for the Michigan head and pain neurology clinic to set me up with an appt.
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I am a sixty year old female and went for my annual eye exam. I was told by my optometrist my left eye optic nerves were elevated - OS>OD. Also has irregular Mac. OS. She had her nurse call and make an appointment for me to see an Ophthalmologist tomorrow. I had a Brian MRI in December and the report reads. "There is nonspecific mild focal areas of bilateral supratentorial which is commonly secondary to chronic microvascular ischemia. MS seems less likely, but cannot be excluded".
I have intermittent headaches only on the left side and at times feel nauseous. Should I be concerned?
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I went to a neuro-ophthalmologist due to some issues with my right eye. Blurry spot. Nothing too crazy, but annoying.
He did Optical coherence tomography (OCT) and vision field test. The vision field test came out fine, but the OCT showed thinning of the optic nerve. He told me he wanted me to be seen for an evaluation of possible MS.
After posting here a earlier this month about whether or not to go see a neuro, I had made an appointment with an MS Specialist. I see him on June 3rd.
Any idea what thinning of the optic nerves can mean?
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A $60 eye exam revealed swelling in the optic nerves that got me a referral an eye specialist, the eye specialist then told me I most likely have high pressure cerebral fluid that is causing the swelling and need a CAT scan to look for brain tumors, no brain tumors were found ....... but the cerebral fluid must be drained to prevent continuous swelling of the optic nerves that will cause separation & blindness.
The CAT scan cost me $1,000
The cerebral fluid draining cost me $1,700
The cerebral fluid draining required a large needle to puncture through the lumbar area into my lower spinal cords, as the lumbar area does not have 1 solid nerve as the upper portion, it is basically like spaghetti so there is NO risk of paralysis when done by professionals with a live X-ray machine to line up the needle between vertebra for safe insertion.
I don't know what measurement scale they used, but the pressure reading was above 40+. They told me normal pressure should be between 8 and 12.
They then drained the pressure to about 18
As I was walking out of the hospital, I had never in my life had such extreme mental clarity and excellent vision.
Shortly afterwards, I noticed that my normal clumsiness was gone that I had dealt with all my life.
Reading
Math
Memory
Physical agility
Strength
Desire
Aggressiveness
too many to list
As I know all my life I was mentally slower than average until that procedure. It has been 1 1/2 years since then, and starting 2 months ago I noticed diminished capacity slowly creeping up as before, as I probably need the procedure done again and don't have the money to do it.I realized that if this high cerebral pressure would have been detected as a child, I could have gotten a better education if it had been corrected.
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My only sister has just being diagnosed with BIH which tells me surely its genetic.
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I have Septo-optic dysplasia, and I'm lucky if I ever get to see someone who's even heard of it because it's apparently one of those rare and awkward conditions with varying symptoms. But basically, in my case, the nerves in my eyes didn't develope well or at all.
I have 6/60-6/48 vision in my right eye and 0 in my left eye; as in I don't even see black or anything at all. I don't think light could ever get in there.
My most recent check up at the Optician showed some discoloration on the optic nerve in my left eye (the blind eye). It appeared black, apparently, which my Optician said meant it had been there a long time, as opposed to grey? But no one seems to know if this is normal for an optic nerve that never formed properly.
Apparently the discoloration is not mentioned in any of my letters on record, though. Is that weird? That's the only thing making me worried. Some people say it should be obvious so not included, but others say that means it's new?
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So to make this as short as possible. About two and a half years ago I had a really bad low blood sugar episode. I'm not a diabetic, I wouldn't say diabetes runs in my family considering only a few have it. I had a really bad diet years ago, few energy drinks a day, cigarettes, and junk food out the ying yang. Now the day it started I hadn't eaten much so it could of happened to anyone. Felt all the symptoms, and thankfully I work at a hospital so when they checked them it was a 47. Ate some food and felt better. That day after all those years of bad food I cold turkey quit all the bad foods and energy drinks. Didn't stop smoking though. I was very active, I mean skateboarding for about 10-12 hours a day. Very thin, about 125 pounds from the age of 15-21. Well since that night it happened I became a very panicked person. I started binge eating because I always felt the symptoms of it, although sometimes I couldn't tell the difference between anxiety and low blood sugar. So I would check my sugars, sometimes they would be fine, other times they would be below 70. When I panic they get worse. Well now I eat the same thing everyday, eggs, spinach, tomatoes, cheese, chicken, protein packs, low calorie gatorades. No sweets what so ever, and I've basically become agoraphobic because of my sugars all the time. I always feel dizzy, weak, shaky, faint. But like I said sometimes I can't tell the difference. These winter months seem to get worse, now lately I can't even tell when they're getting low. Earlier today they were 67 and I couldn't even feel it. I used to though. My anxiety has gotten a lot better but not fixed. I'm afraid it'll drop in my sleep and I won't wake up it's horrifying. No meds ever, no surgeries, nothing prior to this. Always healthy as could be.
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My little girl has been pushing on my nerve since i was 11 weeks. (Now 24wks)
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I've got idiopathic dilated cardiomyopathy. I have Afib with this and keep getting extreme tachycardia which means I have to go to hospital to get it controlled. I have asthma too. I'm in Europe and have good doctors - I was in hospital Saturday night into Sunday - I called my doctor as my heart was beating so fast and irregularly, and it was having long intervals of no beats - I have a stethoscope and could hear nothing at the apex and I've been taught how to auscultate, and I was very very breathless. She was very worried and sent me to hospital. After being stabilised, I saw a a cardiologist who did loads of tests and said my heart was very much more dilated than before. On discharge I've been given 02 to breathe if I feel breathless.
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I have only been taking it for less than 3 weeks and only managed to get to 300mg a day but the side effects are awful. I have now found out what is causing my nerve pain in back and leg ( my L5S1 disc has collapsed trapping nerves) and GP says that I would need a very high dose of gabapentin to ease this nerve pain so I might as well come off it ( waiting to see neurosurgeon). Today I dropped down to 200mg ( 100mg morning and then I was going to take other one before bed). I would normally have taken another one at 5pm. This evening I have had a bad headache around my eyes. like shooting pains. I have now taken the second 100mg tablet to see if this stops the pains.
My Gp said " oh you can just stop taking it after such a short time" but I said I have read it gives back withdrawal if stopped suddenly and he didn't disagree!
So could the headache be withdrawal?
After no advice from GP I was thinking of dropping to 200mg a day for a week then 100mg a day for a week then 100mg every other day until I stop - does this sound good?
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I was recently diagnosed with this in both feet. I'm still not sure what caused it though I am postpartum, have flat feet and wore poorly fitting shoes. I had cortisone shots which only seemed to irritate the nerves in both feet. I just started PT but am desperate to hear that others have recovered without surgery. I know that only the horror stories usually make it online but I'm getting very depressed about all of this
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My son has had swollen eyes on and off but usually only one eye but is has happened in the other. I was told it's not pink eye probably allergies.
This morning he woke up with half of his lip upper and lower really swollen, no bites, not dark, just swollen.
When this happens whichever area is tender not itchy (except his eye but not all the time).
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I had unprotected sex for like a week straight 3-4 times ,a day good intense session each time, with a girl i know is clean(STD Wise). Well thats what i thought(showed me legit papers so that's legit). Anyway the day after the final day of having sex, i notice a few red dots(little) appear on my head and shaft, and my scrotum got swollen red and shiny, and now today the pee hole has gotten a little swollen too. It itches no more noticeably then ever only a little bit(not like i'm itching every 5 minutes), doesn't hurt when i pee or ejaculate, its just freaking me out. I am going to get tested tomorrow but was hoping for some faster advice.
The thing is i shaved all of my junk for the first time(usually just trim) and got what i think is an ingrown hair or pimple (looks like one) on my shaft too, i don't think it's herpes but who knows, i'm just trying to figure what else all this could be.
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