Wednesday 9 September 2009

Day 260 - Intracranial Hypertension

“In the 1890s, a German physician named Heinrich Quincke coined the term “pseudotumor cerebri” to describe a neurological disorder which he believed had all the symptoms of a brain tumor, but without the presence of an actual tumor. The “false brain tumor” that Quincke identified more than a century ago is known today as idiopathic intracranial hypertension (IIH).

There are two forms of chronic intracranial hypertension: idiopathic intracranial hypertension (IIH), whereby there is no identifiable cause that triggers the raised intracranial pressure, and secondary intracranial hypertension, which, in contrast to IIH, always has an identifiable cause (such as a head trauma, an underlying disease, a reaction to a certain drug). Intracranial hypertension literally means that the pressure of cerebrospinal fluid (CSF) within the skull is too high. “Intracranial” means “within the skull.” “Hypertension” means “high fluid pressure.”

Cerebrospinal fluid is one of three major components inside the skull; the other two are the blood supply that the brain requires to function and the brain itself. Under normal circumstances, these components work together in a delicate balance. Since the skull is made of bone and cannot expand, an increase in the volume of any one component is at the expense of the other two components. For example, if the brain swells and becomes enlarged, it simultaneously compresses blood vessels, causing the sub-arachnoid space to fill with more spinal fluid. This results in an increase in intracranial pressure (i.e. cerebrospinal fluid pressure), as well as a decrease in blood flow.

CSF has several important functions. It cushions the brain within the skull, transports nutrients to brain tissue and carries waste away. CSF is produced at a site within the brain called the choroid plexus, which generates about 400-500 ml. (one pint) of the fluid each day.

Chronic IH can cause both rapid and progressive changes in vision. Vision loss and blindness due to chronic IH are usually related to optic nerve swelling (papilledema), which is caused by high CSF pressure on the nerve and its blood supply. In addition, individuals with this disorder often suffer severe pain. The most common form is a chronic headache, which is generally unresponsive to the most potent pain medication.”*

*http://www.ihrfoundation.org/intracranial/hypertension/info/C16


As I type this post, my headache is surprisingly ‘good’. About 2/10 - excellent news! Hopefully by the end of the post it won’t have increased, given its moody temper.

Lately I have been trying to find out why my headache hurts much more the second I lie down (whether during the day or at night) - so far I have only come across one other person (on a forum) whose headache also worsens when lying down. He doesn’t know why this happens either, but he strongly suggested placing corn bags on my head at night. He explained that he has found some relief from wrapping very cold corn bags around his head, having left the bag in the fridge all day long.

A number of people have told me to look at Intracranial Hypertension, as apparently those who are afflicted with this illness also have a stronger headache when lying down.

Curiously, Intracranial Hypertension was first documented in the sixteenth century by a Dutch explorer, Gerrit de Veer, who identified the toxic effects of polar bear liver on early Artic explorers. Several men in his expedition developed secondary intracranial hypertension (SIH) and nearly died after consuming polar bear liver, which contains lethal levels of Vitamin A. Excessive ingestion of vitamin A is now a recognized SIH cause (no doubt children will be delighted to hear this).

When looking at the possibility of having Idiopathic Intracranial Hypertension, one must:

a) have signs and symptoms of increased intracranial pressure, such as papilledema and headache;
b) have no localizing findings on neurological examination (Localizing findings are findings that point to injury of specific brain areas. For instance, a localizing finding could be the inability to move a certain muscle.);
c) have a normal MRI/CT scan with no evidence of venous obstructive disease;

d) have high intracranial pressure of 250mm/H2O or above on a spinal tap, with no abnormalities of cerebrospinal fluid;

e) be awake and alert;

f) have no other cause of increased intracranial pressure found.

I can safely tick all of these but two (namely d and f, as I have not had either of these examined as yet).

Given that my unmitigated headache still remains a bit of a mystery to all, it could be an idea to also look into this condition. Just the thought of returning to my GP grates me - the fact that I have to re-explain everything from scratch pretty much every time is tedious enough, but more than anything what I find frustrating is that I know that deep down many of these doctors just think that I am a hypochondriac. If only they knew.

36 comments:

  1. Ice packs on my head and around my head and neck (sorta encased in ice packs) help my headache some. I guess that would be similar to the frozen corn....

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    1. I use ice also!! It does help. Some days I feel like filling the sink with ice and dumping my head in it!

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    2. Have you tried homeopathics? It can resolve these headaches fairly quickly.

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    3. It's called homeopathy and it's a scam. A Pseudo-science with placebo effect being the only reason why someone claims to feel better initially. Anyone who practices this while telling the clients to reject standard medical treatment should go to prison. Homeopathy doesn't resolve anything - there is absolutely no scientific reason why it would work. The claim that small quantities of poison treat the symptoms of poisoning are not based on science and there are no published peer reviewed studies in any scientific journal which demonstrate any benefits of this quackery.

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  2. thanks, will definitely give it a go!

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  3. My daughter now age 23 also has had a "mystery" chronic daily headache that started suddenly when she was 17. She was diagnosed with Intracranial Hypertension this year (almost by accident) after over 25 doctors failed to diagnose her correctly. A very long frustrating medical saga still going on. We could have had own very long headache blog by now... Anyway, you should consider IH as possible reason for your headache, as IH is common than you might think, is often missed, is far more common in women, can be triggered by various infectious diseases, or common medications. Continue to share, search & never give up!

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  4. I just had a spinal tap done to determine if it was this.. I'm on day 218 of my migraine, and am considering a leave of absence from college. I'm searching for everything, and anything, that could potentially lead me to an answer. I have all of the characteristics of hemicrania continua, and will be calling my doctor in the morning. This is the second headache that's lasted longer than seven months for me... the first lasted for more than a year! Saw one of the best neurologists in New York, and he gave up. I'm seeing another now, and his call the other day proved he was also giving up... I just read your entire blog, from start to finish.. it seems as if we're in the same boat. Good luck to you, I hope it gets better. If you ever feel down, know there's someone in New York that feels the same way as you (I'm even close in age -- 21)

    Thanks for blogging,
    Amanda

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  5. thanks zanna & amanda, it's nice to know there's other people out there who are also going through the same thing as me. i have to say my headache does seem to have improved in the past few weeks, it now averages 3/10, whilst before it was about 8/10 every day and every night... i just hope to see more improvements... any suggestions welcome! thx for your comments

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  6. Add me to the list of those whose headache gets much worse when laying down. It doesn't matter if it is day or night or any other time (LOL). It also doesn't matter if I lay on my side or my back. As soon as I sit up or stand up it is like the headache is completely gone! When I say headache my headache symptoms make my head feel like it's being squeezed and squeezed, and squeezed (now it's as tight and squished as it can be). It also feels like my head will explode.

    I do have an appointment in a couple weeks to have a lumbar puncture. I will post back here with what the outcome is.

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  7. Hi RKnowley

    How interesting to hear someone else also has the same bizarre symptom of the headache getting worse when lying. Will you let me know how the lumbar puncture goes?

    Thanks & take care

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  8. Tomorrow is the day for lumbar puncture. I will stop back here and let you know how it goes.

    Best Wishes!

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  9. Well, I had the lumbar puncture a week ago. The doctor diagnosed me as having pseudotumor cerebi. My opening pressure was 260. The doctor said the norm was anywhere between 100 to 250. He drained a portion of my spinal fluid. That brought me down to 110. He prescibed 500 mg Diamox which I have been taking two times a day. I haven't been thrilled with the side effects of the medication. It has made me so tired and fatigued. It also doesn't seem that the LP or the medication has made any difference in how my head feels when lying down. I so hoped that it would fix that problem. The Diamox is very pricy. It is $220.00 for a months worth. For some reason our insurance didn't pick up of it.

    The next thing I will try is physical therapy. The neurologist, the ENT doctor, my husband, a chiropractor all have said that my neck muscles are very tight.

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  11. RKnowley

    Have you had any further diagnosis/treatment? What's happening with the Diamox? And how are the side effects, are you coping ok?

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  12. Hi,
    I just ran across your blog. I've been diagnosed with IIH after suffering very similar headaches to yours for a very long time, and, like you, I wasn't able to work, and wasn't functional. I'm 28, and have a normal bodyweight - which is not usual for IIH)
    Every morning I would wake up with a horrible headache, dizziness and nausea. As I sat straight up the headache would eventually become bearable. I also would occasionally have throat pain and teeth and mouth pain, also some back pain right around the spine, but only rarely. My neurologist said the throat pain occurred when was when the pressure in my head was very high, because the pressure was high in the entire CSF system.
    On a "good day" - very little headache - I (reluctantly) had a lumbar puncture and my pressure was at 290. The doctor put me on Diamox extended release capsules, but I am also managing the condition with a very low sodium diet. The combination of both seems to be working well. Once I switched to a low sodium diet I could lower the amount of Diamox I had to take (and lower the side effects.) Diamox is a diuretic; it works by partially inhibiting the "pump" in your cells that pumps sodium out of the cerebral spinal fluid and pumps water in. This is normally necessary to maintain the ionic balance in your cells, but if you eat a very low salt diet, there is not a lot of salt in your CSF membrane cells, so your body does not pump more water into the CSF space, so the pressure doesn't build up.
    Anyways, I hope you find relief for your headache. I've been there - my headaches were misdiagnosed as a migraine or tension headache for 3 years until a doctor actually did a lumbar puncture. Now I'm functional and can work more than 80% of the time. (When the weather fluctuates I still get the high pressure headaches but am otherwise good most days.) Good luck!

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  13. For everyone who is wondering why your headache gets worse when you lie down, its because, as some of you might know, the headache is caused by spinal fluid, and so when your standing up there is less pressure forcing that fluid to your head. but when your lying down there is much more pressure forcing the fluid to your brain because your head is now level to the rest of your body. i would suggest sleeping on two pillows so your head is higher than your body.

    Im 18 still in high school and this is my 7th month with this headache. i saw 9 doctors before the 10th one diagnosed my correctly. He gave me a lumbar puncture and put me on diomox. i took diomox for like 4 months and then my headache got pretty tolerable. its been about a 1-2/10 for awhile now. its just annoying as hell. Today i am no longer taking diomox and the rest of the headache will eventually go away on its own. i thought i was gonna have this shit forever. it made me feel like everything in my life was wrong. and that it will never be the same. But trust me people, dont give up, your headache will go away.

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  14. Wow I really feel fro all of you. I have had my headache since July 18th 2010 which is nothing compared to most of you. I was diagnosed with intracranial hypertension on the 21st of July via lumbar puncture. My pressure was 315 and let me tell you I truely hope all of you and myself included will get relief from the horrible pain. Good luck to you all i wish you all the best!

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  15. I've spent the last 3 years quite ill and thinking I had a CSF leak; finally had a lumbar punture but it was 220 - even though I felt best in 3 years - i have all the other symptoms except swollen optic nerve my neurologist is dancing around the news. Oh boy...I was feeling pretty good day of LP - I am pushing for another one and I'll go for a jog all day the day before. IH is a horrible condition. I hear it is hte most OVERLOOKED reason for headaches.

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  16. i have it too and it sux...i had an opening pressure of 260 .. i also got a spinal headache from the lp. they confirmed it was pseudotumor cerebri and started me on meds to reduce the fluid uugghh i hate this disease

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  17. I'm a 19 year old female & I have had this problem all through out my life, to my earliest memories I was suffering of chronic pain. Only to find I have intercranial-hyperactive-hypertension pressure in my skull. It's a doozy! It effects every aspect of my life I feel completely exhausted at all times. my sight is getting poorer, I can't focus my eyes, driving is something that has to be planned for me.

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  18. i'm an 18 year old female, i was diagnosed over a year ago with IH and my opening pressure was over 500. I had a LP shunt placed a year ago, and that helps, but i still have a headache every single day. It never goes away. My family always tell me how proud they are of me. Of what? pretending i'm okay and dealing with the headaches and go on with my life? no one understands anything i'm going through, and it isn't easy.

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  19. Wow. I am amazed at the number of people who share the same condition as me. I am so sorry you guys! I was diagnosed with IIH in 2010 after a routine eye exam showed swollen optic nerves. After two spinal taps with opening pressures of 180 then 270 in January 2012, I am now on Diamox 250/500 and have had some relief. My headaches went from 7/10 daily to 3/10 currently. The low sodium diet also helps as does magnesium and b2 - this was recommended by my neurologist. Keep posting everyone as the info is very helpful!

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  20. I was diagnosed in 2006 at 16 years old. My headache does worsen when I lay down, and I have found that elevating my mattress helps me sleep somewhat.

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  21. My wife was Diagnosed in Dec. 2011. After having a headache for many months. She had a Lumbar shunt put in in on May 16th. Since then she has had two revsion. So 3 surgeries in 6 weeks. The first time the tubing from the shunt came out. The second time the tubing came out of her stomach. Now we do not know if this was has worked or not because she has a awful head cold. So until she can get over it then we will know if the third surgery worked. Any information would be very helpfull so I can help her. It crushes My heart for her to be in so much pain. I really need to know if anyone has tried to get disability or if there any financial help out there because I dont see here going back to work fulltime.

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  22. I was diagnosed with IIH in 2009, then told it wasn't and treated for migraines. After having a severe headache over 18 mths I changed Drs and had another LP. My pressure was 800! I had signs of having had a stroke. Daily LPs were given and Diamox of 4000gms a day bit it didn't drop my pressure. Vision was compromised so I had an LP shunt placed. 4 weeks later it popped out of my abdomen so had a revision and 4 months later after high pressure symptoms returned, I had it replaced completely as it had coiled in my spine and not draining. Also gave me bad back and leg issues. Today I know the high pressure symptoms are back again, only 6 weeks post replacement. It's a frustrating disease, with no cure. For everyone who has a daily headache, for whatever reason, I feel for you. (unless it's self inflicted via a big binge drinking session!!)

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  23. I have had this headache since 2008,every day. I have been to neurologist after neurologist. I have been told it is muscle tension, that it is because I wear my hair in a pony tail every day, or that it must be hormonal. One night my sister searched "chronic headache-wooshing" because I soo often use that word to describe the headache and she found IH. I have every symptom listed and am just relieved to find out I might not be crazy!! Of course we are pursuing this diagnosis with yet another neurol. Thanks for all this info and the knowledge that there may be some relief in the future!

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  24. 9 years ago I was diagnosed with BIH, I was on high dosages of Acetazolomide until a private neurologist took me off of it. From time to time I still have issues with tinnitus, numbness in the face...and some visual disturbances that make me feel like I need to sit down. But these things come and go. All I do is keep myself healthy and active and in the gym. And try to keep the stress down. I hope each of you finds some relief as time goes on.

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  25. Hello fellow IICP sufferers. I've had this nuisance of a disease for about a year and a half. (does anyone else think one of the symptoms is feeling generally pissed off?) Anyway, I was diagnosed after an eye exam revealed the papilledema (swollen optic nerves), but I found out after several months that I'm allergic to one of the ingredients in the Acetazolomide (Diamox.) I was having severe shortness of breath while taking it, but since I also have an autoimmune disease called scleroderma, I mistakenly thought it was all related, until I ran out of my prescription for a week or so, and suddenly I could breathe again! My neurologist put me on Neptazane instead, but I still experience side effects, and I wasn't satisfied with the results. So, I began to try natural health care rather than the conventional "sick care" I was getting from the docs. About 3 months ago, shortly after being told I could have permanent retinal damage or even go blind, I began to see an acupuncturist/cranio-sacral therapist, and regularly visit a chiropractor. Between these two, I have seen huge improvements in both my vision and my headaches. I've had NO dizziness or vertigo since beginning the alternative therapies, and I am gradually getting better and better quite rapidly (even less pissed off :) I also joined a gym, (I was told this can be caused by obesity in some people, especially women, but I'm only about 10 pounds over my ideal weight), and I'm avoiding gluten (many people have a gluten allergy or other food allergies but are unaware - I didn't realize gluten was my enemy until last year, at 38 years old) and I'm trying to eat a healthy diet, which makes me more attune to the fact that what we eat has a profound impact on how we feel. I'm looking into herbs that might also aid in decreasing the pressure, and found 2 that could be promising (researching Zhu yu hua tan tang, and Horse chestnut extract) I truly hope this helps you. I believe in the power of prayer as well, and you are all in my prayers. God bless each of you.

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    1. Please update with results of your natural treatment. My daughter was diagnosed yesterday and I'm desperately searching for natural treatments.

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    2. I have been reading everything I can find for weeks. I was given doxycycline and within several days had mind crushing headaches. I would be very aware of doxycycline, if your daughter has taken, make sure she does not take and I found an extensive blog regarding IH, doxycycline and the use of horse chestnut seed extract as an effective fix. Takes weeks of use, 60mg every 8 hours. I am going to get mine today.

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    3. How is the horse chestnut seed working for you? I have also been researching alternative therapies for iih as I have such bad side effects from Diamox!

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  26. I began my ordeal with a phantom smell. Testing revealed a small benign brain tumor wrapped around my optic nerve. Further testing revealed that I have papilledema and a lumbar puncture showed intracranial hypertension. I was first put on Topamax which made me stutter and made me very forgetful. I often lost common items such as my keys, phone, iPod, etc. I was 50 pounds overweight and I lost 40 pounds of it because I was told it would help to lower the pressure. I have been told many times that my tumor is too small to cause the intracranial hypertension. I have been on Diamox for almost 2 years with almost no change. My ears have been constantly ringing for 2 years due to the medications. I have also developed ptosis on one eye. I do get bad head aches more and more often but mostly I feel like my head is very "heavy". It feels like someone implanted a brick inside my forehead. Some days I just can't function right, but I am fighting this thing all the way.

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  27. I have been diagnosed with IH for two years. My doctor put me on acetozolamide and I feel much better. They reduce my dosis. However when I am under a lot of stress my headache is unbearable. I wonder if someone experience this also?

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  28. Wow, I wish I had found this blog when I was diagnosed with this 3 years ago!

    I was 22 and about 40lbs overweight. My lumbar puncture showed an opening pressure of 550!!! I had an awful permanent headache, that also got worse when laying or bending down. (This, I was told, is just a matter of gravity. Some of the csf that lives in your spine moves up to your head.) I had tunnel vision, and double vision. I heard my heartbeat in my ears all the time. And half of my face was paralyzed for a week.

    It took a while for the doc to find a treatment for me. Went from Diamox (which gave me kidney stones) to Topamax (which made me feel really dumb.. to the point where I was failing some college courses). These meds didn't really help lower my pressure that much, so I decided I wanted to taper them off and try Acupuncture instead. I was amazed at how well it worked!

    I strongly urge those of you who are still struggling with IIH to try it! It is now 3 years later, and I am completely IIH free. A good Acupuncturist can help you lose weight, relieve your headaches, and fix the actual source of the problem.

    I wish you all the best of luck in your recovery!!

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  29. I discovered what my IIH is due to. All my docs & neuro said no, it is IIH. IIH is just a symptoms, but what causes it?

    I was able to figure it out because so many people in my neighborhood had various symptoms & we all had one thing in common. We were all bit by ticks.

    When I started treatment, then the bacteria spread from the blood brain barrier & to the rest of my body & I finally developed other Lyme symptoms. Meanwhile I had headaches & IIH for YEARS before.

    I have since then discovered others who had IIH & who also tested positive for Lyme. Lyme is not just one bacteria, but many different kind & it can be spread through fleas, horse files, sand flies, some mosquitots, ticks, & other biting insects. It is becoming a BIG EPIDEMIC. Everywhere I go people are getting it & suffering.

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  30. My 9 year old has recently been diagnosed with IIH. I feel so bad for her. None of the medicines help her, even migraine coctails in the hospital. We recently started Neurontin. I hope it helps. It was supposed to have sedation effects, but it keeps her up all hours of the night unless we also give her benedryl.
    I have wondered about celiac because others in our family have that, but her pediatrician won't test for that because she was negative for wheat sensitivity. I wonder if you can just go straight to a lab in the US and get tested for that without Drs orders.
    She has an MRV scheduled. I just hate to fix this with surgery if a gluten free diet would fix it. She has had a headache now since January and is at the point where it makes her cry everynight now and have trouble getting to sleep. Her opening pressure was 28mg Hg, but reducing pressure didnt makehead pain better, even for one day. Any advice on getting dr to test for celiac?

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