Dingo!
Fire Frog's
*Intra Cranial Hypertension Page

(* Also called Pseudotumor Cerebri, Idiopathic Intracranial Hypertension
and Benign Intracranial Hypertension.)


Elizabeth has an evil twin sister, Dingo!

(If you don't get this you have never watched
'Monty Python and the Search for the Holy Grail'. Shame on you!)

Intra Cranial Hypertension (that I shall mostly call ICH from now on, to save typing) used to be called Benign ICH, but the name was changed due to it's tendency to caused blindness in people who go undiagnosed too long.

Yes, blind. Scary stuff.

As you know, I have a brain tumour, so when I started telling my specialist doctor that my eyesight was going odd he immediately assumed it was a tumour side effect and nothing to worry about. I worried any way, and put feelers out for somewhere that I could get a second opinion from. I also mentioned my symptoms online at one of the support groups for pituitary gland tumours.

Two people emailed me right away and told me not to wait, but to get on it strait away. So I went to my regular doctor and firmly asked to see a second specialist. This he arranged, and I am glad I got him to do it, for like a brain tumour, ICH is not something you want to leave undiagnosed too long. Did I mention the blindness thing?

As it happened my own specialist appeared happy to have had the second doctors opinion and they contacted each other immediately. Between them they cobbled together my treatment. I wasn't nearly as worried about that as I should have been - I was still stuck on the whole blindness issue.

Oh, I wasn't paralysed with fear. I went online and searched ICH up and down. There are a lot more sufferer's of ICH than of Pituitary Tumours and therefor way more links and support groups etc. But what wasn't coming clear to me as I swam the information highway was how likely the whole blindness thing was to eventuate.

Should I just sit back and see what happened (yeah, rriiiight!) or should I immediately order in a brail computer, find homes for all my beloved pets, sell the house and move into a one room apartment that would be easy to navigate around in?

Don't laugh, these were serious issues. How hard is brail to learn, anyway? Would it be easier to start learning it while you could still see, or wait until....later? And who could I rely upon to look after my animals as well as I do? Which family member could be trusted not to over feed them, give the correct daily medicine, hug and love them like I do? And damn it, the guppies had only just started having babies! I'd waited ages to see those itty fishdots swimming around. Life sucked!

 

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My Symptoms

Numb toes and feet while lying in bed. Pins and needles as well.
Pressure behind eyes, eyes tearing.
Visual disturbances.
Cold sensations in head.
Feeling of pressure in head, felt as pressure at back of throat/nose and soft bit of the roof of my mouth.
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.
Thrumming noise in ears (actually the sound of my own heartbeat).
High pitched squeak (called tinnitus).
Lethargy that lasted months.
Visual blackout that lasts several seconds after standing up.
Dizziness on standing/squatting.

Vague but persistent nausea.
Problems with speech, i.e. stuttering, slurring words, spoonerising (Hello pal = pello hal).
Phantom sensations, like warm water being poured over head/legs/behind eyes etc and olfactory input like the smell of smoke (strong enough to gag on) or baking bread that is not there.
Eyelid twitching, small mini seizures involving arm, leg or head movement.
Pin like sensation in ear, wet ear.
Dry mouth.
Water retention.
Weight gain.
Night blindness.
Non-thought, when you try to think through a head full of cotton wool.
Feeling of disorientation/confusion.
The Dot. (see
here.)

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In my search I found that all of these indicators correlated to ICH, although there were may more different symptoms and many different degrees of 'effect' for each individual who gets them.

By the way - I eventually found that there is only a 5% chance of going blind, thanks to a link on someone's Pseudotumor Cerebri Page to the 'University of Iowa' web page. (Hey people, put links to your index page on your web pages, or your name, so others can credit you properly, you deserve it! )

Visual loss
The most serious problem patients have is vision loss. About 5% of patients go blind in at least one eye. These are usually patients who do not return for follow-up evaluation.
Snippet thanks to 'University of Iowa' http://webeye.ophth.uiowa.edu/dept/iih/pc_3.htm

The effects of ICH mimics a brain tumour (hence it's name as Pseudotumor Cerebri - fake brain tumour) so can be as weird, spasmodic and varied as they can be. Fascinating; and calming to my hypochondriac labelled self. I continued searching the web.

Meanwhile the doctors had come up with a plan. Lumbar Punctures (LP's), one a month until no longer needed. Oh, and I had to lose weight. Yippy.

The Weight Thing.

I am a vegetarian. Not a lot I can cut out of my diet, but I tried. Unfortunately cutting out all the bad bits took away all the good bits as well and I soon had a vitamin imbalance. Price you pay, right?

I joined a gym. I hired a trainer and trained with her for 1 hour three times a week. I walked from half to one hour every evening. I parked my car as far away from where I was going in the car park as I could, just to make myself walk more. At the end of six months I had lost 5 kilos. I didn't feel much better for it. And they wanted me to lose 15 at least.

I have talked to others online and I have come to the conclusion that the weight gain we suffer is not the cause of ICH, which is what many doctors believe. I think the ICH causes the weight gain.

At the time of diagnoses I weighed 95kg. Since early teens I had weighed a constant 75kg, the weight gain had not been overnight, but had happened within a few months.

My theory is that ICH is linked to the weight gain not by being a cause, as is commonly believed, but by being a symptom. And like many of the symptoms associated with ICH, not everybody gets it, or if they do get it, they may not get it all the time.

I have been told by a visiting specialist that I probably no longer had ICH, as I was not obese. I weighed 83kg at the time. My latest LP had read 32, which is high. The guy was wrong. I have read reports of thinner people being told they don't have ICH because they aren't 'obese' either.

The so called 'fat chicks disease' is a myth. Guys get it, children get it and light weight women get it.

Look at how irregular the weight thing is. There you are, bound down with incredible lethargy, going to the gym when all you want to do is curl up and sleep for a hundred years, eating baked beans 'n' lettuce. For what? You lose a lousy couple of pounds.

Then the pressure drops, you've got the energy to run rings around the world, but you gave up on the stupid exercise and diet thing ages ago. Why? Because it actually made you feel sicker. So you're doing what you always do, no special exercise etc, and you lose weight!

Tell me again how the weight affects the ICH? Nah, it's got to be the other way round. When your pressure is high doing exercise and dieting is just another cross to bear. You're feeling like shit, you work your ass off for little gain - ultimately the sacrifice is NOT WORTH IT!

I have changed some of my eating habits. I still park furthest away in the car park. But be damned if I'm gonna make myself feel sick doing sodding exercises again. I'll diet etc when my pressure is down, not when it is high. And that is my advise to others - do the exercise diet thing when your pressure is low. It will help you more then.

By the way, this in No Way reflects on my trainer. She was great and I would never have done as well as I did if I had not had her help.

Nicole - you are a superstar!
Thankyou kitty
Thank you

 And that is all I have to say about that.

Diamox.

The specialist did give me some pills, called Diamox, to try out. I nearly fell asleep at the wheel of my car, they made me that tired (and remember - tiredness is a symptom of ICH anyway. So I was waaaay tired!)

Plus the tablets made my hands tingle so badly I couldn't feel what I was holding in them. Another side affect I discovered was to make carbonated drinks like coke taste kind of metallic and yuk. (Not yummy! Yukky! No coke, what was I to do?!)

I couldn't handle the tiredness thing so went off them fairly quickly. (The yukky coke had nothing to do with it. Nothing. Maybe a bit. Actually, no - it didn't. If life was a cartoon it would have - but life isn't.)

After six Lumbar Punctures (LP's) I reconsidered and went online to see what I could find out about this drug my doctor didn't seem to be to upset about my not taking.

From MJ Moore's support group I discovered that the best way to start taking these tablets is bit at a time. Begin with taking only a quarter of a tablet, then half a one, then three-quarters and finally a whole one. Take each bit until you are used to it, then take the next bit up.

This worked wonders compared to the doc's 'just take it' approach. I still had tingly hands occasionally, and coke tasted odd, but on the up side the tiredness thing was negligible.

Head wise the tablets did work, for several weeks. When they started to slide again my doctor upped the dose to two tablets. I used the same bit at a time method. Again, I had a good result, but my pressure has continued to slowly increase anyway.

Since taking the tablets I have been blessed with water retention. Press a dimple into my leg at night and it may still be there come the morning. I have gained/lost 5 kg in one day from water retention, this dramatic occurrence is horrible to experience and makes dieting look even more like a fools errand.

High ICH pressure makes you sleepy. The Diamox makes you sleepy. Double Diamox makes you more sleepy. Ergo - I am having four-day stretches of 'very, very' sleepy, with side garnishes of headache and general high ICH. And increased mini seizures, which may be the result of the high pressure or of taking the Diamox itself! Oh joy!

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A Look at Some Symptoms.

Please note that all symptoms can be different for each individual and that many symptoms are shared by other illnesses as well, don't go self diagnosing! Try a doctor first. They've got to get their kids through collage somehow!

Phantom Smells
Phantom Sensations
Phantom Noise
Migraines
Pressure
Eyesight
Memory Loss
Nausea

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Fighting Non-thought.

How can you stand up for yourself when the thoughts are coming slow and gooey, trickling their way past a wall of solid cotton wool? How do you insist that this test be done, that you want a different doctor to perform the LP, that maybe the procedure should be moved forward a little?

The answer is you don't, mostly. On days when you can spend half an hour staring at the wall without a single thought popping up - not even 'gee, is that off white or sea shell colored?' then any bigger ideas just haven't got a chance.

And these sorts of days arrive at the most crappy times imaginable. The day you try to arrange the sale of your house, for instance. I hate non-thought days.

What's to be done? Again I say, nothing much. You just have to live through them. Enjoy the silence of your own mind. For god's sake don't get sad about anything - it surely will end badly!

And try to put off any decision making, even though all decision making of long term importance seems to crop up on non-thought days. Put it off! Hide!

Wait for it to pass, because eventually it does. Yes - this to shall pass, my dear. But it surely is a pain in the bum in this present moment!

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Why Aren't The Symptoms The Same All The Time,
For All The Patients?

I have a theory. There should be a picture I drew coming up soon to illustrate it. The brain is not a ball. It's more a shrivelled walnut shape. So pressure does not hit it in a unified way, it builds up in the little creases, creating areas of high impact.

Because the shape is non-uniform the fluid (an excess of which is what causes the pressure) moves about randomly like air in a blow up mattress. (The ones with little pockets that always seem to have one or two bladders uninflated no matter how hard you try to fill them out by squeezing air towards them. You just end up with uninflated pockets elsewhere.)

So the walnut shape results in unpredictable movement and build up of pressure over different and random operating sites.

brain diagram.

Oh, here is that picture!

As you can see, our walnut shaped brains result in different pressure points each time the pressure changes. It is the pressure impacting on these brain structures that triggers the symptoms. This is why the symptoms are different for everyone and can even differ on a day to day - hour to hour basis.

If the brain were a ball the pressure would be evenly dispersed and of the same strength all over (it would be felt less too, as it would be spread over a wider area.) The results would be identical and constant symptoms for all sufferers.

So speaketh Fire Frog - the logical.

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Added Bits

(21/12/02) -
The Environment & Health Safety Officer my work has paid to see me says I do not have 'migraines'. I asked him what they were and he could not label them, so I shall continue to call them migraines. In his ten-page report he does suggest that I am seeing 'hallucinations'. This guy is not a qualified neurosurgeon or specialist doctor, but his verdict does carry weight and it upset me.

I'd like to take the time now to thank everyone who has previously written in to say that they too have experienced the things that I have. Especially those that have identified with the pictures I have put up on my Migraines Page. I would be feeling quite shaken and doubtful of my own perceptions right now if I didn't have those many comments to back my experiences up with.
So
Thank You! © © © ©

(21/11/04)
I'm working a 12 hour shift, my pressure is 32 and has been for awhile. I am the head Technician, and have to hand out jobs to my four person crew. Which is lovely as at least once per night I go to address them and forget their names. Even better, I sometimes can't remember the name of the job I'm sending them to and have to pantomime it. At least two of them have a sense of humour about this. The others think I'm an idiot. Sigh
K ...

(?/01/05)
They took me off shift and made me ordinary day crew. Then sent me to see the work chosen specialist doc in Perth. Four weeks later am told the results of this event.

Why - they say they never disbelieved me about my diagnoses! O_O (Except for that one boss who told me strait that I didn't have memory loss, because he knew someone who had it and I was obviously a fake, I suppose.)
They say they want to help me! If I get a migraine at work I can take a tablet and go sleep it off in the sick bay! I won't need to go home and not return again until I have obtained a note from my doctor.

They have no recollection of me suggesting that in the first place. None at all O_O Maybe they have short term memory loss!

The specialist observed in his exam the 'Venus Cluster' at the back of my eye throbbing! This impressed him, as he told me about it three times! Woo. On a bad note he also thought I was a candidate for a shunt. Bummer. Stay tunned…

(01/10/08)
The shunt did not go ahead. Yay! However, my doctor decided that, despite a few head jerks and such, I was showing no signs of ICH now. I am, he insists, too old to have it any more. News to me, who has read of 74 yearolds that have it, but still... I went off the Diamox. Not soon after I began having near continuous little muscle spasms. They made it hard to sleep at night. Doc wasn't concerned. Started to get strange 'falling' sensations, and smell stuff that wasn't there. Then I had the hallucination that my hands were on the wrong arms. Had this four times. My GP said to go back on the Diamox. It is making me sleepy again (and I had worked down to only infrequent bouts of sleepiness! Arrgh!) but the muscle spasms, smells, falling and hand swaps stopped at once. So, forty is not to old to have ICH.

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Lumbar Punctures.

This is a tough call for me to write about, or for anyone who is not a doctor to advise on. Having said that, here are my words of wisdom.

One - if you need a LP you 'need' it. Do not put it off, do not allow other people to sway you, be as informed as you can be and be prepared to question the doctors and nurses to see if they know as much as they should about the procedure.

Two - they hurt. Some people will tell you they don't, then later, when you have had your's and are wondering if the sensations you felt were normal and something has perhaps gone wrong, they will suddenly say, "Oh yes, but mine was much worse than that!" They are trying to reassure you and make the procedure less scary when they say that it doesn't hurt. But truth is that Lumbar Punctures hurt.

Kidney stones and tooth extraction hurt more. As does child birth, I'm told. And a good doctor, someone who does regular epidurals on pregnancies for instance, can make the pain very marginal indeed.

Some sensations you may feel - the cold of having the swab run over your back. The prick of the needle that delivers the numbing solution to the area. Make sure the doctor waits long enough for this to have worked before proceeding. A pressure is felt when the needle that is going to draw the spinal fluid away is inserted. Movement is felt as the needle is adjusted to go through the spine to the protected cord.

Shortness of breath may occur as you curl in the porcupine position to allow the spine to open up. This is an uncomfortable position and may make your arms go numb. Your legs may cramp as well, tell your nurse this, they need to know and take precautions, especially if you suddenly can not hold the position by yourself and need assistance.

Dull but intense pain is experienced when the needle hits a bone. Sharp bright pain if a needle hits a nerve - one of your legs may involuntarily move if its nerve is hit. Tell of any pain immediately to your doctor. You don't have to be eloquent; a repetition of "Hurts, hurts, hurts!" will get their attention!

Should you feel pain, tinglyness or numbness in your legs tell the nurse immediately, a nerve may be being pinched. When the needle is seated correctly I feel a warm pain in my tail-bone (the coccyx), I don't know if others get this or not, it could be just me.

I have become 'faint' whilst the procedure is being done, which indicates a pain response that I can not feel (so I was told by the attending nurse). Tell someone if you feel faint, break out into a heavy sweat or start to hyperventilate (breath too fast). Nursing staff find LP's fascinating to watch and may not be paying all that much attention to you, so tell them!

The doctor may reposition the needle several times. The most times my doctor did this was six. I have also had the local pain-killer travel down a vein to my butt, making my awareness of the big needles entry 'very' acute. At first my doc didn't believe me, but eventually he stopped and gave me another local before proceeding again.

After the LP you should lay down flat for several hours and drink as much water as you can. When you are first shown to your room, make sure there is a jug of water there, if not, ask for one. Your eyes may be slightly light sensitive, so ask for the curtains to be drawn. Do not put a pillow under your head or have the head of the bed raised so that you can see. This will cause your now thinned out spinal fluid to drain from the brain, which will hurt.

Always have someone to stay with you afterwards. If you go home, go strait to bed and do not get out of it until the next day. Have your stay over person check on you.

If at all possible though, stay overnight at the hospital. Several things can happen after a LP that the nursing staff are trained to pick up on. One of the nasty things is infection of the spinal fluid. The symptoms for that include a high temperature, which the nurses will monitor you for all night. Another thing is LP leak, where the hole in your back doesn't close properly. This normally isn't a problem until you've had several done. If this continues for several days you may need to have the hole blocked with a blood patch.

Then there is the sickness caused by having too much spinal fluid drawn off by the LP. The symptoms of this and a leak are very similar, nausea, bad, horrible headache if you get anywhere near vertical, tiredness. The cure is rest and plenty of fluids.

Pack for hospital -
Bendy straws so you can drink without sitting up.
Night clothes for your stay overnight. (Plus, when you go in, be sure to have good nickers on. The fun of a spinal tap is made that much more 'fun' if you're worrying about the doctor getting an eye full of the crack of your ass!)
Hairbrush. And if you have long hair, a tie back to wear when the LP is being done.
Toothpaste and other morning/night time freshen up items.
A good book to read.
Earplugs to drown out the noise of the other sick people.
Blindfold to block out the night-lights the nurses need to keep turned on.


Don't be afraid to ask for extra pain-killers during the night but be aware that the nurses are likely to be doing the strict four hour between doses thing. They still need to know if you are having an increase in pain right away, so tell 'em.

Note! Ask for the LP's to be done in the morning, the pressure will be at it's highest then (that's why we tend to get those headaches in the morning).

It takes three days for the optic nerve to compress and three weeks for it to un-compress. That is why the visuals continue to be wonky even after a Lumbar Puncture.
I remember how that concerned me after my first LP's - I'd expected my eyesight to snap back immediately!
J

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Look on the bright side - when every one is swapping 'I had *fill in the obligatory intestinal, heart or lung* nightmare surgery done and lived to tell about it!' tales we'll have the best stories!

Hippy Smile
And we have some of the coolest drugs too!

My Pages
 To see what my migraines look like, hop on over here

To look at some info I've found on the internet look here

To find out about my brain tumour scope this out here

Links

Personal Story of MJ Moore
http://www.mjmoore.co.uk/bih/myexperience1.htm

Message Board/Support
http://www.mjmoore.co.uk/forum/

Pseudotumor Cerebri - Support Group
http://groups.yahoo.com/group/PsuedotumorCerebri/join

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Mail Me Quick! firefroghome@modnet.com.au