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Living With a Pseudotumor Cerebri/Idiopathic Intercranial Hypertension Diagnosis

Updated on April 27, 2016
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Introduction

After being diagnosed with this disease in October of 2008, I was surprised and dismayed to find so little information on Pseudotumor cerebri.  Sure you can find medical reports and statistics, but the human side has been lost.  Nowadays there is a lot more information out there then there was then.  Reason maybe being it's rarity, less than 1 in a 100,000.  Although these numbers have grown in just the two and a half years I have had it.  Another reason may be the fact they still do not know the cause.  

It is primarily found in women of a child bearing age who are obese, although I personally am not over weight.  There are also young men and women and older men who are getting the disease, although the numbers are considerably lower, they exist non the less.  It has many stages and treatments.  I would like to touch more on the daily living of the disease and the ways I have found to alleviate some of the symptoms.  Maybe give you a heads up of what to expect in the months and years to come.

Warning signs and Diagnosis

I started to notice a headache one day in October, I had awoke with it and could never really seem to shake it throughout the day.  The next day it was still there and getting worse it seemed.  Not being one for having headaches and being pregnant I put if out on stress.  The days that followed it continually got worse, I was puking every morning and I literally felt like my head was going to explode.  It wasn't like any headache I had ever had, it was a pressure like  your head was in a vice.  When I finally went to the emergency room, I had not been able to keep anything down for days and I just wanted someone to screw a hole in my head to relieve the pressure.

The first hospital I went to was CMAC of Charleston, WV.  I have no qualms putting their name out there as a place not to go for this disease, maybe their treatment would be better than their diagnosis skills.  But alas I will never put myself in their hands again.

I won't describe the horrid treatment and unethical behavior, however I will touch on the mis-diagnosis or maybe lack there of.  First I was told it may be menegitis, then was given a lumbar puncture.  The position of this procedure is imperative to the proper diagnosis, which is lying on your side.  They were trying to give me one hunched over with an ever growing belly.  After about an hour of failed attempts and Oops I keep hitting bone, I was pretty much done.  I was given a half-hearted talk about checking cultures, which was pretty much bs and sent home.

I felt a bit of relief from the headache, the seven failed attempts had produced a small amount of fluid thus the relief.  In hind sight the pain caused to my spine from repeated puncture may have also lessened the pain in comparison stand point.  However the next day I awoke to the same pain.  Being literally scared to go to another doctor, due to treatment at aforementioned hospital, I stayed home another week in pain.  I couldn't eat, sleep, just lied there with my eyes closed.  I have never been a baby for pain, but the most I have ever felt in my life and I have birthed two children.  So i know, the pain is very real and excruciating.

In desperation I went to another hospital after two failed attempts at others.  I went to Cabell in Huntington, Wv, hands down the best, although I may be a little biased.  I was given a cat scan first to look for tumors, as this is what all of my symptoms would indicate.  Seeing nothing there, they gave me another lumbar puncture.  Although usually being accompanied with Valium due to the fact of false high pressure with anxiety, I was pregnant and was unable to go that route.  They basically have to take a pressure sample of your spinal fluid through your back, although still not quite sure how that one figures out.  My pressure was high, although I could have told them that and the diagnosis was made.  

The first time I heard Tumor and cerebri which I knew was the head, I was scared.  I had  a child growing inside of me and I felt like I was just handed a death sentence.  The doctor, I wish I could remember her name, explained a bit of what it was.  I was told to look up the disease when I got home and urged to stay away from forums.  She also put me on Acetazolamide three times a day. 

Appointments to Expect

So after getting the diagnosis, a visit to a neurologist will be the next step of your journey. It shouldn't take long for this to occur, my visit was actually 3 days later. There he will surely do some blood work to check your levels, depending on the medication prescribed, will debate what they are actually going to be looking for. Mine being Diamox, my doctor checks my protein levels for liver function approximately every 3 months.

When in the neurologist office, they will give you a battery of test. To me, it is almost like a sobriety test. They will check your reflexes, coordination and legs for swelling. I believe for another side effect of the disease. These are all painless test that usually in whole take about 20-30 minutes. Your doctor will also want to check your optic nerve, which entails the light close to the eyeball while you stare off in one spot. They actually have to dilate the eyes a bit and look behind the pupil. Of course there will be questions as well about side effects , nausea and sight or vision problems. You must understand that although the pain is in your head, the real danger is the pressure in your eyes, kind of like glaucoma. Although I am sure death would be an end if uncontrollable, the main thing to worry about from what I have researched is widening blind spots, Papilledema, or worst-case scenario vision loss and blindness. Hasan Ercan at Cabell hospital in Huntington, Wv is who I use, saying this to simple add he is wonderful!

Next will be a visit with an Opthamologist, this one will take a few weeks from my memory. In my experience, this visit will not be quite as pleasant, not really painful but uncomfortable none the less. They will first dilate your eyes with a yellow mixture, then they will check the pressure of your eyes. This will be done by a nurse in which you will rest your chin on a strap and they will blow air very close to your eyeball. I have a tendency to pull back when things comes towards my eyes, so I actually have to have another nurse hold my head in place. After a period of time in a room waiting for your eyes to dilate, you will be taken in to another room. They will then do a field study, which will entail looking in to a screen with one eye covered. You will be told to push a button every time you see a light speck. This will gauge your peripheral vision and any loss there of. They will then do the other eye the same way, in my experience it is usually 10-15 minutes for each eye. After that will be another machine you stick your eye up to, where they will take a picture of your optic nerve to look for any permanent damage there. Next, you will see the actually doctor you are there to see, he will talk to you for a moment while going over your results. Hopefully you will not get any bad news. If you do, you go to the next step of the disease, you have made it this far you can do it.

Like I said, none of these are particularly painful, however your eyes will feel strained and sore. The dilation will obscure your vision markedly and light will be very uncomfortable. Having another person to drive you home is optimal, however I have always driven myself home after these visits. Usually, with no pressure on eyes and everything looking good, you can expect to have these appointments every 6 months or so. If you are not during all of these test and at least every 6 months you are jeopardizing your health and your eyesight in particular. Find a specialist that you are comfortable with, but will also go through all of the steps that are needed.

You may also be sent to your local hospital to get a MRI-V.  This will be to look at the vessels in your brain to see if there is any areas of concern.  I would consider taking a couple of Ibuprofen before you go, the test will last 45-60 minutes.  You will have to answer a few question  about any metal you may have in your body, old tattoos, etc.   After changing in to a gown, you will get in to a large circular machine on a rolling tray.  The first part is around 30-40 minutes, you will have to remain perfectly still and a loud piercing sound will come from the machine.  Second part you are rolled out and dyes will be injected.  Back in you go for another 10-15 minutes or so.  

Some will have to get emergency and/or periodic lumbar punctures. From your side of it, I am sure you have already had one since that is the telltale test. Again, find a capable person to do this, I have had good ones and bad ones and there is no need for any extra pain. Do not be afraid or embarrassed to speak up if the local is not deep enough in, or if the pain is too much. Usually a Valium may be given through an Iv, if you are pregnant a pain medication may be given through an Iv.

A stressful situation will cause headaches due to the raised cerebrospinal pressure which may lead to an emergency room visit. Know your hospitals and always stick to one you trust. I have had one of these episodes in the past and was given a pain medication through an Iv. Some doctors will opt for a lumbar puncture, although if you are not privy to these on a regular basis and no vision difficulties are present, you can always request the less invasive treatment. This is your body and your health, research your disease as much as you can, be proactive. I also recommend keeping a notebook of questions for your doctor, the average time spent with you're actually doctor is 15 minutes, so make the most of it. Thoughts and questions will go through your head the months in between and I have found it is good to have them all written down.





So what can I do?

First and foremost take control of your health, know what the steps of the disease are and where you are in it. I personally would be in the second phase of the disease as far as medical intervention, although I have researched the progression to keep myself aware and cautious. The steps are as followed.

1. In some cases the first lumbar puncture will alleviate the excess pressure to end their symptoms.

2. Oral diuretics-acetazolamide (Diamox) --Furosemide

3.Optic nerve sheath decompression. This is primarily used for vision loss and eye pressure. This is a surgical intervention to increase blood flow to optic nerve

4.Cerebrospinal Fluid Shunt. This is the last resort technique, it is usually very effective in short term relief. However long term the statistics are high for further surgeries.

There are several other forms of medical interventions that may occur and they are coming up with more as the disease becomes more common. If you are at the earlier stages of the disease there is some things you can do to try to stunt to progress or in some cases put it in remission for good.

If you have any excess body fat that is possible to shed, it is imperative that you do what you can to do so. Extra weight brings extra pressure, this is usually why most of the cases are over weight or obese women. More than not, cases spring up at a time of weight gain. This is your best chance of putting the syndrome in remission and hopefully for good. Last time I checked it was 1 in 3 will experience remission with a severe enough weight loss.

For pain relief, in some cases migraine medication will be prescribed. OTC ibuprofen and/or tylenol can be used for dull minor headaches. However please keep in mind that taking OTCs more than twice a week will cause residual headaches. I have found that wrapping a scarf tightly around my temples for about 15 minutes or so, can do wonders sometimes.

Try to change your diet to lower your salt intake, this will help stop water retention. I have also read articles recommending to lower your fluid intake as well, I will neither confirm or deny. I worked with a specialist from Arizona named Dr. Foster who wanted to use the concept she used for migraine patients on my condition. The basis was a diet that was low in adrenaline foods such as citrus, cutting out most premade food to relieve yourself of a lot of chemicals. Paired with at least 30 minutes of exercise daily to raise your seretonin levels and magnesium. I will admit this is a hard diet to stick to but if followed strictly I believe you could really find a benefit in this as far as your headache and your anxiety levels. I found results in as little as 2 days. In adding all the whole foods and cutting processed foods, you will also see a very quick slim down of your figure. I have provided her link below because I do believe this will benefit you.


Closing

I hope that this was helpful for you in one way.  To either let you know that you are not alone or to give you a useful tip or two.  There will be times waking up that you just wish the headache wasn't dull and throbbing  or you don't have the nausea.  Just take that to drive you to the weight loss you may need to put this in to remission.  If you have done this and you still have symptoms, just take it day by day.  Every day try to make it better, by lowering your stress and being mindful of the affects of what we put in our bodies.  I urge you to constantly look for new information on this disease and learn anything new that may help you.  My best wishes to you.

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    • kaiyan717 profile image
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      kaiyan717 2 months ago from West Virginia

      Wow, thanks for the comment! I wrote this article many years ago and a lot has changed. It reminds me that I need to write something more current. Information is getting better and I have found lifestyle has a huge part to play. Mine was manageable for many years without any medication. I went to herbs for healing and changed a lot about my life to reduce stressors. I changed my job, location, relationships, anything that would cause episodes was cut out. But life isn't so straightforward and life happens. Now I have sprang a leak :( We all have a journey with this and I am thankful to hear of relief brought to anyone in pain. I will have to look into treatment mentioned. My fiancée gives some great head massages that I swear do something magical. Diet has a lot to do with it. There is a link provided for a diet that I was put on years ago to avoid certain foods. I found just getting a lot of the extra chemicals out did wonders.

      Thanks for writing and sharing some wisdom. I always like to hear about someone that has found some relief. I love the amount of sharing that goes on in these comments. I learn more from others that share this hurdle with me, then I could ever learn reading all of the studies and talking to my doctor.

    • profile image

      Victoria J Rose 2 months ago

      Hi Kaiyan

      I just found this page, 3/4/17.

      Everything listed was VERY familiar.

      In 2017, I'm now 59 years old, and have always been petite and thin, not overweight. I did not have the extra factor that weight can contribute, yet I've experienced all the worst symptoms (pain, dizziness, tinnitus, vomiting, fatigue, depression, visual disturbances...) for 2-5 year stretches, BEFORE getting this successfully sorted out.

      After 3 major PTC episodes, over an 18-year period (onset at ages 19, 30, & 37), I've learned a lot. All my episodes were ultimately found to be triggered by endocrine hormonal imbalances in my very sensitive/reactive body PLUS environmental stressors of many kinds.

      Many chemicals can add up to trigger PTC in the sensitive person. In my case, it was artificial AND natural hormones being out of whack.

      1. birth control pills,

      2. Danocrin/danozol medication prescribed after endometriosis surgery,

      3. PTC due to pregnancy-related endocrine/hormone changes.

      Over time, we discovered:

      1. Sensitive by nature:

      I'm physically and emotionally sensitive, period. Starting with a sensitive neuro-endocrine system.

      I feel it's blessing to be sensitive, AND a challenge being a "canary." We are NOT defective, we're sensitive. Honoring this reality is important.

      2. Environment matters:

      Inside (what we consume) and outside (what we expose ourselves to) matters.

      When a sensitive person adds ANYthing which disrupts endocrine balance, PTC can flare.

      Triggers for me: ANY stress, low barometric pressure, volatile chemical exposures (perfume, cleaning supplies, gas & diesel fumes, paint, nail polish, glues & mastics in construction, new car & carpet odors, -you know: stinky stuff!- Then, also menstrual period time (an extra female layer), poor quality food, medication side-effects, do all accumulatively layer and add up until PTC kicks in.

      Knowing triggers means we can build up a safety zone via avoidance whenever possible.

      Change, improve, and avoid whenever practical!

      3. Doctors really can and do miss the boat, SO discouraging and expensive. The anguish of suffering, lost time, and confusion is crushing. Then, when a correct

      diagnosis occurs, the main treatments are invasive & symptom chasing, not corrective and healing. Only hoping for "remission." I disagree with that approach.

      4. Basic helps: learning our sensitivities, minimizing triggers, implementing healthy weight and lifestyle changes (best personal diet/no crap/factory foods, no-toxin toiletries or household chemicals, avoiding

      places where chemical smells are obvious-beauty shops, gas stations, heavy traffic, painting, etc- all help).

      5. Diuretics:

      drug diuretics hurt as much as help. :-( Trading lowered pressure for side effects, plus drugs are NOT restorative: bummer. I learned to use fresh raw juice instead.

      Wow: a NATURAL diuretic that actually restores electrolyte minerals, instead of wasting them like Lasix. Plus raw juice has wonderful enzymes in nutritious, delicious, life-giving food.

      Healing. Best Practices!

      6. Treatment:

      FINALLY, for incredible and immediate pain relief, I discovered that Osteopathic Manipulative Medicine (OMM), is a life-changer. Craniosacral Osteopathy doctors trained in this modality can actually, gently, non-invasively calm & redirect intracranial pressure with their hands. They can alter fluid flow, drainage, and dynamics that helps reset our spinal fluid circulation and calm our nervous system. Incredible really... got me off pain-killers immediately, stops vomiting, etc. WHAT a relief.

      Over time, I learned all my triggers, all the tiniest warning signs of a flare-up (now very rare), AND what to do to restore healthy

      equilibrium of my sensitive/sensitized system.

      Rather than looking at this like a "disease" to be put in "remission." Big difference, healing AND avoiding drugs.

      I still get an annual (or biannual;) check up with my

      Neuro-ophthalmologist to make sure my eyes are safe. Why? Because our intracranial (brain) fluid pressure

      and intraoccular (eye-fluid) pressure are connected together.

      That's why high intracranial pressure causes simultaneous intraocular pressure which can squash the nerves in the back of our eyes and eventually lead to

      blindness. That's my little safety check, & I'm good!

      So, be encouraged, this IS fixable. We ARE sensitive; it's vital to learn self-care and health-building habits. And where to go former help.

      Education, honoring our fundamental needs,

      plus optimum diet plus raw juicing, plus Craniosacral balancing work for me, beautifully. Together, these all add up to more than just wonderful sanity-saving PAIN relief, but can actually lead to health and strength. Now THAT's healing.

      I wish all my kindred sufferers well, and to find hope from my experiences. Pseudo Tumor Cerebri can be "cured," by restoring and maintaining healthy physical equilibrium. Which is WSY better than confusion, suffering, drugs, and surgery!

      Sometimes, with extreme acute symptoms, and by not being educated as to cause and effect, we turn to drugs, and surgery looms. It doesn't have to end there! BEFORE surgery, at least get a thorough evaluation and treatment by a professional

      trained in craniosacral osteopathic manipulative medicine, and research raw juicing for health and as a diuretic. Likely no shunt needed. Watermelon juice is awesome, and also a blend of cucumber, carrot, beer, and greens. Basic basic, start there.

      You WILL pee far more ounces of urine than you take in as juice.

      When our body is toxic, it holds onto fluid to dilute our system. This increases intracranial pressure. Fresh raw juice is healing, chick full of needed minerals and enzymes, and triggers dumping of edema fluids. Voilà, brain fluid pressure drops.

      Then, a craniosacral treatment helps open the ventricle drains in our head, relieving pressure, as the excess cerebrospinal fluid can escape more readily, and be drained through normal channels, via urination. Awesome; support the body, it wants to heal.

      I literally was in such bad shape that I was finally scheduled for a shunt surgery. Fortunately, I discovered juicing a month before my surgery date (20 years ago, in Indiana, juicing was very new/uncommon!). The right diuretic raw juices made surgery unnecessary. Wow; that got my attention.

      Today, I remain well. On the rare occasion that I fall off the self-care wagon, and insults/triggers pile up, at the FIRST sign of any pressure symptoms from my sensitive brain, I simply return to best self-care (not drugs, not surgery).

      1-3 times a year, I still go in for a very therapeutic osteopathic maintenance treatment that's good for all kinds of reasons, not just to avoid recurrent PTC.

      All the best to you and the others who have written. Hope springs eternal, you can beat this.

    • kaiyan717 profile image
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      kaiyan717 4 months ago from West Virginia

      I am sorry to hear that you have had it so long. I was blessed with remission for several years, but now I have sprung a CSF leak and get low pressure headaches. It is a battle and I hope you have the strength every day to fight. I hope remission for you or some way to help you get through the day a little easier.

    • profile image

      Stephanie 4 months ago

      Hi. I have had a Pseudo Tumor Cerribri for years, since about 2009. And now legally blind, because of it. I can somewhat read digitally, it's blurry and double vision. I get pressure headaches etc...and have been told nothing can be done for it, even if I went to the er...I have also had a spinal tap.

      Your article is completely correct. Glad I'm not the only one!

    • kaiyan717 profile image
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      kaiyan717 10 months ago from West Virginia

      Mal, sorry to hear about your diagnosis. There are several forums on facebook that might be helpful for you. You can get a lot of information and support there. I wish for you remission and all of the best. :)

    • profile image

      Mal 10 months ago

      I am about to turn 30 and I am newly diagnosed with pseudo tumor cerebri. I went for my first lumbar puncture today and I still have no relief from this. Thank you for writing about your experience, it is comforting to hear about someone who has gone through what I am about to go through. I wish you the best.

    • profile image

      Christine 13 months ago

      I have had a similar experience, especially with emergency medicine not recognizing the signs and symptoms. I spent 4 years in pain, being treated as a drug seeker before I finally got some actual help and a full diagnosis.

      http://christines-iih-journey.blogspot.ca/ is where I've shared my story.

    • kaiyan717 profile image
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      kaiyan717 3 years ago from West Virginia

      Chelle, I am glad if anything helped you. My doctor told me, you have pseudo tumor cerebri, Google it and stay out of forums. Lol. They really don't give you much to go on. I am sorry to hear you were diagnosed, and so young. I hope for you remission and I pray that you can keep your spirits up to find ways to deal.

    • kaiyan717 profile image
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      kaiyan717 3 years ago from West Virginia

      Sherri, I wish I would have seen your comment a while back, I am sorry to hear you are out of remission, my biggest fear. I am intrigued to hear the doctors chose medical marijuana, although I am not surprised. I never went on anything for the pain, although I did smoke. I helped the pain and nausea, almost enough so that I could get through the day. When I was first diagnosed I had quit smoking and I wonder if there is a connection. I seen that you said you quit and then it came back, how long?

    • profile image

      Chelle Oliver 3 years ago

      This post actually gave me a lot of information on the disease. I am only 15 and I started showing symptoms around age 13. So I am one of those cases where is is showing up in the younger generation. I was diagnosed with it less than a year ago after my neurologists finally came to this conclusion. She never really gave me any insight on it. This really helped me in understanding this. I am really and truly thankful.

    • profile image

      Sherri 3 years ago

      I was diagnosed in 2003-

      Have been given all the drugs, unfortunately I am severely sensitive to Diamox, Lasix, and anything that will reduce fluid pressure. So I had to stop all.

      I did lose about 60 pounds and then went into remission for 3 years.

      Since I cannot go the drug route, I take natural directics such as asparagus, watermelon, ect. Anything that reduce water. Then I was recommended medical marijuana.

      My doctor sent for a specialist in Us and he came to educate my doctor and see for himself that, for me, this was working.

      No side effects, reduced the pressure big time! Managed my headaches which went away completely

      Although not perfect it was the best solution for me since I had no side effects.

      No lumbar punctures, yippy!

      No fast forward to today, I did go off the marijuana since it went into remission, but life came about strong with many other big stresses.

      I gained back 32 pounds symptoms all back again. back to the doc?

      Plus , heart issues now.

      So I am back to weight lost and exercise ASAP.

      Back to the marijuana to help with the symptoms and vertigo.

      Right now, the best I can say is watch the weight, but don't wait for that.

      Meditation yoga, helps huge!

      Back to the battle, positive frame of mind is Key!

      No sugar treats in the world is worth the crude this thing brings on, a healthy diet will work wonders. Get out and swim play, dance just move.

      Stay positive folks, I am right there with you.

    • profile image

      Mobile Spy 4 years ago

      Long time follower and this is my first time posting. I’m not so good at this but; that your blog is very judicious and Im always looking forward to your new content.

    • kaiyan717 profile image
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      kaiyan717 4 years ago from West Virginia

      Shaylene King, I hope you are following these posts, yourpost was a lil long and they put the comment in a spam alert so I did not see it until I was editting this hub. Yes you can have this disease and not be over weight. I ran into the same problems because I was not round persay. However, a lack of a brain tumor in a ct and elevated cerebralspinal fluid. The new term is idiopathic (don't know why) intercrainal hypertension, so lack of another problem gives you this diagnosis. My doctor at one point told me I must be in remission and I was told I would have to take a spinal tap to prove that I still had IIH. So I went off the Diamox and it turns out I actually was in remission. The Diamox causes headaches if it lowers your CSF too much. That may have to be the way to "prove" it ( yes, it sucks I know) but you may have to go off Diamox or a day or so ( feels rough) and then get a CSF measurement without the Diakmox holding your pressure down. Listn to our body though, if it is time to go to the doc, go. Hope this helps and God bless!

    • kaiyan717 profile image
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      kaiyan717 4 years ago from West Virginia

      It is a hard diagnosis to deal with, but you can do it. I hope remission for you.

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      Addie's Momma 4 years ago from Bakersfield, California

      I was just diagnosed a few days ago with this disease and I'm scared to death. I really felt a little better after reading your article.

    • kaiyan717 profile image
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      kaiyan717 4 years ago from West Virginia

      I hope remission for you and losing weight and getting healthy can definitely help your chances. God Bless you and your boys :)

      Just keep a close look on your eye pressure if you aren't taking meds hun.

    • profile image

      Elena 4 years ago

      I was diagnosed on 2011. I was pregnant as with twin boys by that time. I'm currently in treatment for this condition. First thing I started doing it was losing weight by eating healthy and being more active. The Mediterranean type of diet is awesome!! I lost 15 pounds in 1 month. Symptoms still there, but I'm giving my self an opportunity to change before trying medication or surgery. I really apreciate your post. I apologize for my grammar. English is my second language.

    • kaiyan717 profile image
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      kaiyan717 4 years ago from West Virginia

      April, I wish you hope through this. A positive attitude is hard to maintain, yet so vital. There is always hope in remission. I finally got remission after a little over three years and I hope the same for you. :)

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      April 4 years ago

      I actually started crying just reading this. I was diagnosed with PTC in March 2012. Everything you wrote is the truth. Just wish the process of getting into a doctor was a lot faster. I have had a MRI and a MRI-V also had my heart checked. I am going next month to see the N-O for my spinal tap and I am also going to see the Opthamologist. My doctors so far are amazing. I just started the Diamox. I just wish the ringing in my ears would stop for good and my headachs will go away. Everyday is a struggle but WE all must be strong! WE will overcome this! God Bless Everyone!

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      Jamee 4 years ago

      Thanks for your post. I was diagnosed March 2011. Woke with head pressure then vision loss. I work at a hospital so got right in with a neurologist. I have changed since then though because they thought i had lupus and was more worried about all my blood work than my head, so changed Drs. Iam on diamox 2 pills BID, so 2000 mg a day. Side effects suck. I was doing better then my head started getting worse and started losing my hair. I found out that you can have the pressure with to much fluid or not enough fluid. But symptoms for me are the same. So I have adjusted my meds to 1 pill BID doing better. Its hard to live with. I have my good days and bad days, where I still need the extra pill. I notice the pressure outside and change in weather have a huge effect on me. I have intestine disease so the meds I am on right now are effecting my weight lose. Not obese but would benefit to lose some. They want me to lose 15lbs. It's hard for others to understand how I feel which is hard. Since they can't see the pain we are all in they just don't understand. My husband is getting some what better. Of course being a man who wants to fix everything has a hard time seeing me in pain, losing my hair, numbness to hands, feet, face and vision problems. I would love if they had more info on this. Like why isn't our heads draining the fluid like it supposed to. What's blocking it from doing that.

    • kaiyan717 profile image
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      kaiyan717 4 years ago from West Virginia

      Yikes on the prices! A CT will show if you have any tumors in your head. A lumbar will show if you have increased pressure in your head. A MRI-V will rule out blockages by way of your brain vessels (bunching, etc). The test should be in about that order too. I also don't know if it is viable, but yo may qualify for help from the state on your medical expenses. It seems like these test should have already been done, but may not be because of your insurance issues. Just remember that hospitals and emergency rooms have to diagnose you, meaning these tests. I know the cost sucks, bt your health is worth more than anything else, without it, life is impossible. This can be a costly disease, depending on how it goes. I will keep you in my prayers and thoughts.

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      SognoPiccolo 4 years ago from Wilmington, Ohio

      Im not 100% on it... I believe he said I would need an MRI or a CT or something but I won't find out anything until I go to the N-O. (The paperwork stated they charge $500 for the first visit up front when you pay out of pocket... and that's just the initial test not scans) So maybe it's the area I'm in but I wish it would be that cheap. lol.. The regular ophthalmologist I just went to was $300... but luckily they didn't charge extra for the second visit ... lol.. I'm a mess, so having others to explain things makes it way easier lol. =) thank you

    • kaiyan717 profile image
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      kaiyan717 4 years ago from West Virginia

      Okay, um Psuedo tumor cerebri is not actally tumors, benign or otherwise. I am not sre what he is talking about, hopeflly you don't have actal tumors. This condition is your brain being smushed because there is no room for it, due to the excess fluid. So, it is like having a tumor, side effects, etc, without one being present. I have had two lumbars in over 4 years, although I have been in remission almost a year. A lumbar puncture is the tell tale way to see, it will see how high your Cerebral spinal fluid is, over 10 or so is high. Those that have weekly or monthly lumbars, either cannot handle the drgs side effects or they are pregnant, or it just doesn't help. The lack of knowledge was the scariest thing, but there is so much more info since 2008. If you have it, staying calm is all you can do. Testing at the nuerologist isn't too bad, cost is about 150 or so every six months. Opthamologist will be a couple hundred every 6 months or so. Perscription that I was one (diamox) cost about a dollar a pill. It isn't so bad, I just think to myself, it could be worse you know. Could have been a real brain tumor, is how I look at it. I hope the best for you.

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      SognoPiccolo 4 years ago from Wilmington, Ohio

      Thank you.. I have not had any of the actual tests yet but I have my very first appointment set up for the very near future. The ophthalmologist explained to me that the PTC in combination with my poor vision (cause unknown) is what is causing the headaches and eye pressure/pain, other issues. He actually said the words "cluster of pseudotumors or benign tumors" behind my eye... I believe is how he worded it when he explained it to me. Currently, on an unrelated issue, I was informed I was legally blind without correction but with glasses I should see 20/20... they said the best they got it so far is 20/25 but the double vision, halos, and rays (beams coming off objects with light sources) make it difficult for me to see clearly beyond 15 feet comfortably before it gets blurry. They said the PTC should not be interfering with my prescription to the point of them being able to correct it so there may be an underlying cause that's yet to be determined. With the PTC I've had a few minor blackouts that have lasted just a few seconds but he stated they could only get worse or I could completely lose my vision entirely because of it unless I get it taken care of... I was referred to a Neuro-ophthalmologist in Columbus that is supposed to be the best in the area. I'm just super nervous at the idea of going through all kinds of tests. Looking at forums has only made me more nervous at how some cases are so severe they require lumbar punctures monthly. It's mostly a waiting game for me right now until the appointment to see what's going to happen next.

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      kaiyan717 4 years ago from West Virginia

      I know a few people who drove for a living that are no longer able. The pressure on your optic nerve from your cerbral spinal fluid can case temporary and even permanent eye damage. Have you had a spinal tap to see if your spinal fluid is high? If you have PTC they are not really migraines, it is your brain having no room with the excess fluid. A lot of the dizziness and double vision are associated with increased pressure. I don't know where yo are located, bt finding a doctor who is familiar or at least willing to learn is imperative. The pressure in your head mst be lowered to relieve your eyes. If you have any questions that I can answer for you, you can always email me at kaiyan717@yahoo.com... There are also many forums to be found with many people that will try to help yo. You are not alone and God bless your recovery and hopeful remission.

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      SognoPiccolo 4 years ago from Wilmington, Ohio

      I just recently visited an ophthalmologist because for some reason no eye doctor can correct my vision 100%.. they think there is another underlying cause, but during that visit they informed me I had PTC... I haven't been to my neuro-ophthalmologist appointment yet but I think I am more worried about the bills piling up since I don't have insurance. The migraines are the worst for me though. On top of the PTC I have what the Ophthalmologist called an abnormal shaped astigmatism and it almost seems to be amplifying all the major vision issues I have been experiencing. Halos, double vision, dizziness... not having the correct prescription... it all adds up to me feeling miserable every morning I wake up. I haven't been put on any kind of medication or had any major tests done yet... eye dr. just started me on eye drops so far for a dryness issue... It looks like a long road ahead and it looks like a crappy one lol... I do have a question though for some of you... I don't currently drive because I don't have completely corrected vision yet.. but do any of you have issues with driving with PTC?

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      Shaylene King 4 years ago

      I know this was posted over a year ago, but was researching Pseudotumor trying to find information showing people who are not overweight can have pseudtmor. I have had it since 2004. I was 32 years old. I have my horrific stories too and went from UCLA to UCSF to OHIO to finally Stanford where they diagnosed me after a lumbar puncture that was high but not screaming high. I had such relief though from the puncture. It was like clouds lifted. I could think better, talk better and I didn't want to die anymore from the pain. I have taken diamox since 2004. It has helped tremendously, but was not told I should take a potassium supplement until I ended up with kidney stones from it. TAKE POTASSIUM SUPPLEMENT if on diamox. Our hearts need it, helps with the chemical balance and actually makes u feel a little more energy. Anyway...Every day still a struggle but sympotoms returned harder about 6 months ago..even tho on diamox and strage sympotms started to occur. I will skip play by play but after several docs and testing found the diamox after 9 years has been changing my body chemistry and my respiratory system is now fighting it, causing NOT good symptoms that will be significant problems if not off the meds. I need to get off the diamox. I met on Tuesday with a neurosurgeon to talk about shunting..after a lumbar puncture 6 weeks earlier and recommendation by neurologist. He (neurosurgeon) not confident I have pseudotumor because I am not overweight and my lumbar puncture was high end of normal...but that was WITH diamox!! Very frustrating that I need to try and prove to him because he is just going on the info they have been saying for YEARS and YEARS. Even though my body has had all symptoms of PTC and relief with PTC treatments. Easy to feel alone with this disease!

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      christina 5 years ago

      Thank you so much for posting this...i'm going through some hard times with this illness.my neurologist had me taking 9 diamox a day and I felt like crap all the time. I ended up going to the ER cause the pressure behind my eye was so bad..they drained 15cc of spinal fluid and I felt wonderful ! But from me still taking the diamixi ended up getting a spinal headache and back to the ER.THE anesthesiologist took me off the diamox for the time being.i still get pressure behind my eyes..my vision will be like pixels and my peripheral vision is like shiny rippled water.the worst feeling ever. I've found drinking coffee will sometimes help with the pressure. I've also noticed that I retain a lot of fluid around my face and neck when my pressure is high. I have a lot of clicking in my head which is the pressure changing and almost like feeling you're in a fish bowl and your head is in a vice grip.i have a hard time comprehending what people say and get very confused.

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      kaiyan717 6 years ago from West Virginia

      Thank you for your comments and Bless you with your second surgery. I was unaware of the side effects of Diamox on your gall baladder, although it does not surprise me. I still take diamox and I must say, the side effects do not seem to lessen over time. They are horrible, but I guess I have learned to live the new norm.. Although I will say, I can not sustain them for much longer, due to erosion in esophogus and other issues. I may soon be in your shoes and I hope I will have the strength. To one day for a cure :)God bless

      Thank everyone for the comments, it really shows how many different heads this disease has.

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      rachael.eady 6 years ago

      I found out in 2008 that I had it. I had my fourth child in oct 2010 within three weeks after i finally went hospital for severe head pressure and vision loss and my blood pressure was high.. within two weeks in nov. 2010 I had to have a shunt put in.. the diomax gave me such awful side effects I couldn't take it... in jan 2011 I found out my shunt is not workin...then had to have gallbladder surgery bcause the meds... now this comin fri I have to have my second surgery to fix my shunt... so god bless us all and good luck to everyone who suffers from this

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      Barbara Radisavljevic 6 years ago from Templeton, CA

      I had never heard of this disease, but I will keep all of you in my prayers and pray that they will find more effective treatments that are less invasive. My heart goes out to all of you who live with this.

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      kaiyan717 6 years ago from West Virginia

      Thank you for your comments, I feel the same way about being lucky, I know it is so much worse for so many others. I am currently on a low dose of acetazolamide and have talked about Topamax, but the pills scare me. I hope all goes well for you, I personally want to smack my doctor for some of his (grow out of it remarks too!) In your opinion, does Topamax really help the headaches, cause some days they kill me.

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      Amy B 6 years ago

      I was diagnosed 3 years ago by my opthamologist who found the papilladema, bless him, and so my whirwind is very similar to kaiyan, but backwards in order. He must have said "You have to have a CAT scan of your brain in the next five days" about nine times in five minutes. It was the day after Thanksgiving or he would've sent me over to the emergency room right then to rule out a stroke, that's how bad my optic nerves looked, apparently.

      I have idopathic ICH (Intra Cranial Hypertension - the new and IMPROVED! name for PTC). I was 52 years old at diagnosis, and five years past my hysterectomy, and had recently lost 20 pounds, which was more than the 6% of the weight that is supposed to influence reduction in cerebro-spinal fluid. To quote my neurologist, her practice is hoping I'll grow out of this someday.

      Three years later I still have it. I've had three lumbar punctures, which have lowered the pressure some each time. The first was guided by a fluroscope, which is just a fancy X-ray machine. I had a spinal for my C-section, so I knew what to expect and while these are not fun, they are certainly doable. Spinal headaches are not fun either - drink coffee or a caffienated drink - it really helps.

      Anyway, I take a relatively high dose of Diamox daily. I take Topamax and Amyltriptaline for the headaches daily. They all help. But I still show signs of the chronic, underlying condition. Just saw the eye Dr. last week. My eyes are no longer in danger. The papilledema is 98+% resolved. My field of vision is fine. I see 20-20 with my glasses. New symptom- he found a spot of blood next to my optic nerve. Nothing to worry about he says. As if. Just another sign of the ongoing condition he says. As if....

      Seriously, as conditions go, it could be worse. I'm one of the lucky ones, and I know it.

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      kaiyan717 6 years ago from West Virginia

      Thank You for your comments! I am glad to hear that you are both at peace with it and can manage as well as possible. It sucks, is the only way I can describe it. They made a foundation for research in 2009 for intercranial hypertension and you can link up to that via facebook. ICHFoundation.org Sometimes you walk around with this and no one can really see what is going on inside. Rare disease day is coming up February 28th, our best chance for a cure is awareness and funding for research. My heart goes out to you both, some day soon, they will know more I hope.

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      alt81 6 years ago from Kentucky, U.S.A.

      (I reposted my above comment after signing in)

      Like the comment before mine, I am thankful to know that I am not the only one. I am glad that your pseudotumor is manageable. I was diagnosed with the condition when I was 24, one week after I gave birth to my son in 2005. In hind sight it is likely that I had the condition all during my pregnancy or the greater part of it at least. About a week after my son was born I got up in the middle of the night to feed him. I turned on the light in his nursery and it seemed as if I was looking in a fun house mirror. The floor looked eye level and everything was disproportionate, and my head was hurting worse than I have ever felt. To make a long story short, within the next week I made 3 trips to the ER and got sent home each time because they found no reason to keep me. The 4th time Western Baptist Hospital in Paducah, Kentucky, misdiagnosed me as having a spinal headache from the epidural. They decide to give me a blood patch which is a procedure they do to literally "patch" a tiny leak in your spine that is sometimes left after an epidural. At that point the took blood from my arm and injected it into my spine. Of course since my ICP was already elevated, shooting more fluid into my spine nearly killed me. I spent 9 days in ICU and nearly died. My heart rate was irratic for nearly a week and I had a hemorrhage in my optic nerve. I was in so much pain, I never went unconscious but wish I had because the pain never let up. I was unable to move my head. My mother later told me that I had such a high ICP level that it was literally pushing my brain out of my skull and down my spine, this is why I couldn't hardly move my neck! After close to a week I was finally properly diagnosed and given lumbar punctures and medication.

      It has been 5 years. I am still battling Pseudotumor but I am so much better than I was in the beginning. Weight loss is still my main goal, but it is a day by day process, but I find comfort in the fact that my child wasn't harmed, I didn't lose my life, my sight, or have brain damage. God was truly watching over me!

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      AmandaT 6 years ago

      Like the comment before mine, I am thankful to know that I am not the only one. I am glad that your pseudotumor is manageable. I was diagnosed with the condition when I was 24, one week after I gave birth to my son in 2005. In hind sight it is likely that I had the condition all during my pregnancy or the greater part of it at least. About a week after my son was born I got up in the middle of the night to feed him. I turned on the light in his nursery and it seemed as if I was looking in a fun house mirror. The floor looked eye level and everything was disproportionate, and my head was hurting worse than I have ever felt. To make a long story short, within the next week I made 3 trips to the ER and got sent home each time because they found no reason to keep me. The 4th time Western Baptist Hospital in Paducah, Kentucky, misdiagnosed me as having a spinal headache from the epidural. They decide to give me a blood patch which is a procedure they do to literally "patch" a tiny leak in your spine that is sometimes left after an epidural. At that point the took blood from my arm and injected it into my spine. Of course since my ICP was already elevated, shooting more fluid into my spine nearly killed me. I spent 9 days in ICU and nearly died. My heart rate was irratic for nearly a week and I had a hemorrhage in my optic nerve. I was in so much pain, I never went unconscious but wish I had because the pain never let up. I was unable to move my head. My mother later told me that I had such a high ICP level that it was literally pushing my brain out of my skull and down my spine, this is why I couldn't hardly move my neck! After close to a week I was finally properly diagnosed and given lumbar punctures and medication.

      It has been 5 years. I am still battling Pseudotumor but I am so much better than I was in the beginning. Weight loss is still my main goal, but it is a day by day process, but I find comfort in the fact that my child wasn't harmed, I didn't lose my life, my sight, or have brain damage. God was truly watching over me!

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      AmyJ 6 years ago

      Thank you for this post. It really helps to know there is someone who has been through a very similar situation. I also went to Charleston and had a similar experience, from lumbar puncture positioning to treatment in the ER. I am not obese, not pregnant, but have this disease. I decided to go somewhere else as well. All the tests that you have been through have described my experience as well. I am in the same phase, taking 2000mg of Diamox a day. I am now seeing a CFS specialist at Johns Hopkins who continues to run tests. Excersize and eating right is definitely the way to go. I will take your advice on the non-processed foods. I could do better in that area. Really, you have been very helpful and I appreciate your post.

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      MurciélagoHeart 6 years ago from San Francisco

      Wow, thanks for sharing, God Bless.

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