Pseudotumor Cerebri Overview and Diagnosis
Pseudotumor cerebri occurs when the intracranial pressure (the pressure inside the skull) increases. This can happen for no apparent reason. The symptoms of pseudotumor cerebri mimic the brain tumor symptoms. However, there is no any tumor (that is why it is called “pseudo” tumor cerebri). It can occur in both adults and children.
If there is no any underlying cause for high intracranial pressure, pseudotumor cerebri is referred to as “idiopathic intracranial hypertension”.
This condition can lead to swelling of the optic nerve, which may lead to vision loss. In most cases, medications can be used to reduce the pressure. Some cases of pseudotumor cerebri require surgery.
What Are the Most Common Symptoms?
• Ringing in the ears and pulsing
• Photopsia (you see light flashes)
• Vomiting
• Nausea
• Double vision
• Dizziness
• Back pain
• Neck pain
• Blurred vision
• Headaches (you may have moderate or severe pain around the eyes. This pain can worsen as you move your eyes)
• Visual obscurations that last several seconds
Pseudotumor Cerebri Causes
The causes are still unknown; however, doctors believe that pseudotumor cerebri can be caused by too much cerebrospinal fluid in the skull. The spinal cord and brain are surrounded by this fluid (it is produced by the brain and its purpose is to protect the tissues). If the fluid isn’t properly absorbed, this can increase the intracranial pressure.
Brain tumors can also increase the pressure in the skull, because there is no enough room in the skull (for the tumor). Intracranial pressure can also increase if the brain swells.
Pseudotumor cerebri is also seen in people who have stenosis in large sinuses (transverse sinuses); however, it is still unclear whether stenosis (narrowing) can cause pseudotumor cerebri.
What Are the Risk Factors?
The following problems are associated with pseudotumor cerebri:
- Head injury
- Mononucleosis
- Kidney disease
- Underactive parathyroid glands
- Addison’s disease
- Lupus
- Lyme disease
- Sleep apnea
- Polycystic ovary syndrome
- Obesity
The use of certain substances can increase the risk of pseudotumor cerebri:
- Tetracycline
- Growth hormone
- Extremely large doses of vitamin A
- Oral contraceptives
Nearly 10 % of people who have pseudotumor cerebri also have problems with vision, and can become blind eventually.
Pseudotumor Cerebri Diagnosis
• Brain imaging: MRI or CT scans will rule out other conditions with similar symptoms (blood clots, brain tumors, etc).
• Eye examination: a doctor will look for papilledema (swelling) in the back of the patient’s eye. Visual fields tests can also be used.
• Lumbar puncture (spinal tap) can be used in measuring the pressure in the skull. A needle is inserted between two vertebrae located in the lower back.
How to Treat Pseudotumor Cerebri
This condition is treated with medications (in most cases). Obese individuals, who have pseudotumor cerebri, are strongly advised to lose weight. In patients who have problems with vision, surgery can be done to reduce the pressure.
• Glaucoma medications can be part of the treatment. These medications reduce the cerebrospinal fluid production.
• Migraine medications can help you relieve the headache caused by pseudotumor cerebri.
• Diuretics can be used to reduce fluid retention and prevent swelling.
Pseudotumor Cerebri Surgery
• Spinal fluid shunt: a thin tube is inserted into the brain to drain away cerebrospinal fluid; the tubing goes to the abdomen, and that is where the shunt discharges the cerebrospinal fluid.
• Optic nerve sheath fenestration is another method, but it is not always successful. Sometimes, it can make vision problems worse.
I was diagnosed with Pseudotumor Cerebri in Jan. 2008, I was 25 yrs. old at the time and it had to be one of the scariest things if not the scariest thing i have ever been through. when i first noticed my seemingly normal headaache got progressively worse. Over the coarse of a year I went from taking 2 tylenols a day to try and mangage the pain to taking 24 within a 24 hr. period. The doctors were no help they thought my weekly visits to the emergency room were because i was addicted to pain killers. Lol, As if my tears were fake. Then when i thought things could’nt get any worse, I began to lose my sight, I also began to hear a pulsating flow in my right ear and I was very sensitive to lights and noises. Which all made the headache a thousand times worse. The doctors ran test after test and finally after almost a month in Good Samaratian Hospital in Baltimore a neurologist/neurosurgeon by the name of Dr. Nair figured out what was wrong and over 8 months performed 9 surgeries to implant, revise my lumber shunt. Which has been working well for the last year and a half. With fingers crossed and always praying and a beautiful 8 month old little girl I hope to add many more years to that.
In 2001 when I was 19 I began taking Minocycline for acne problems. In hind sight I remember starting out with back pains that gradually moved up into my shoulder blades. Then I began getting headaches and at night I would hear gushing sounds in my ears to the beat of my heart. It wasn’t until I was sitting watching a basketball game that I had a massive headache that peaked and I temporarily lost my vision. This was about four months after I had began taking this medication. The next day I got in with my doctor and told him about my headache (losing my eyesight even for a few seconds scared me to death). He wasn’t sure what was causing my problem so he put me on Vioxx I believe and wanted me to go for an MRI. Insurance refused to pay for the MRI but settled on a CT Scan of my head. This scan did not show any problems so my doctor said to continue taking the vioxx for a few days to see if my headache would ease. Two days later I woke up with no eyesight at all. All I could see were blurrs of colors. I ended up in the emergency room upon my doctors orders and after 4 hours of the ER doctor not believing that I couldn’t see anything, she finally looked in my eyes and knew that there was a problem. I was rushed into a room where they attempted a Spinal Tap three times and ended up taking to X-Ray to better align my Spinal Tap. Fluid shot out of the Tube when they finally got it in my back. My optic nerves had swollen shut. I was put on Diamox 3 times a day for a while and then gradually brought down to once a day. I now only take it whenever I get a headache that will not go away. My doctor does not think that I should be going on and off this medication but I hate some of the side effects of Diamox so I prefer to only take it when I need to (which is only for a couple days every month or so). My eyesight did come back to normal about a month after treatment started but I am more sensative to sunlight now. My doctor is currently trying to find information on this condition and whether I will always be effected by it or if it should go away. Any information is greatly appreciated and I’m glad that I found this site.
We live in the UK
My Daughter was diagnosed within a few days of having bad headaches and vision loss, she had a LP shunt op within a few weeks and she seems to be pain free now apart from her permanant vision loss and low pressure headaches
the thing is she was also diagnosed with an Under active thyroid, so cannot lose weight easily.
i see there are young shildren as well as very slim adults with this condition, so what i do not understand is why i read that being overweight doesnt help, when it clearly affects anyone
Back in April of 2009 I was 24 and I started having neck pains that were so bad I couldn’t turn my head and my shoulder hurt too. Then I started having severe headachs I would go to the ER and my Doctor and They would tell me I had migranes and give me a pain shot that would knock me out but when I woke up the pain was still there. This continued for weeks the headachs got worse and then I woke up one day and couldn’t see out of my left eye. Everything was blurred and hard to see. They finally put me in the hospital and did ct and mri everything came back normal. They did a mri of my eyes and after a week in the hospital I still had headachs and couldn’t see well out of either eye by this time. They sent me to a eye specialist and and he knew excatlly what was wrong with me. After nearly 2 months of pain that was so bad I couldn’t get out of bed. They told me I was overwieght and to lose weight would help. So I did now I have quit taking my Diamoxx and gained some weight back and I’m starting to have headachs again. I really didn’t believe that weight had anything to do with it. I think I believe now. I am going to have to start back on my meds and diet!
I was diagnosed with ptc in ’05 when I was 12. At 15 I got pregnant and they were sure I was going to go blind. 2days before my son was born I went blind in my right eye for 5 seconds. When I had my son much pain was relieved but I’m 17 now and weigh almost as much as I did right before I gave birth. My headaches are so severe I can’t even clean. Has anyone else experienced more sever headaches after activity?
Esperanza,
Any ONE of these is a sign to go to Emergency room or call 911 immediately:
Sudden vision changes
Sudden, severe headache
Problems with walking or balance.
Shortness of breath.
Feeling faint or dizzy.
Sudden numbness paralysis or weakness in your face arm or leg, especially in one side of the body.
Feeling confused. Difficulty speaking or understanding.
Sudden, Severe chest pain or pressure.
Go to an Emergency room asap.The activity of cleaning may be raising your blood pressure very high. Temporary blindness and severe headaches (both on the list)are things that need to be evaluated immediately in an emergency room/911.
Best wishes.
I had never even heard of this disease until 3pm today. I’m 46 yrs old and noticed that when I covered my right eye my left eye vision was like looking in a “funny” mirror at carnival. So I scheduled an appt with opthlamologist. My symptoms are:
Distored Vision in Left Eye
Pain down left arm
Pressure feeling at base of skull on both sides, sometimes pain behind ears on head.
Temporary Blindness a few times in left eye.
The Dr. today was great, I ended up being there for 5 hours and he did the mapping tests etc and my optic nerve is swollen. My GP had done an MRI last month that came back normal, so without the vision problems, I just figured it was weird stuff happening. I don’t feel crazy now for all the odd symptoms. I see the Neurologist in a week and I’m trying to keep thoughts hopeful that all will be ok.
I was glad to find the postings today by others and hope that all get well. (especially the ones so young).
I was diagnosed with the condition at 17, I am currently 32 years of age. I have 3 beautiful kids 13,10, and 8 months. It started with the severe headaches, and blurred vision. I was taking pain killer after painkiller(Goodies headache powder) like 10 per day. I was on my way to school and fainted, was rushed to the hospital. I stood in the hospital received test after test with no results and worse of all no relief. Finally I was discharged which turned out to be a good thing. I complained to my mom that I was going blind in my left eye she panicked and immediately took me to a eye doctor and he is the one that discovered all the fluid on my brain. I was immediately rushed back to the hospital where I received a “spinal tap”. The pain was gone and I was relieved. Unfortunately it is incurable and I have suffered ever since. I received another spinal tap in July of this year and I am due for another. I’m in constant pain. I have to always pace myself with my day to day activities. Glad to see I’m not alone, and I wish you all the best!
For all who had children, what did you use during pregnancy? Im planning on getting pregnant and acetazolamide is not a drug that should be used during pregnancy. I need an answer.Did you all continue using or was something else used.
I was diagnosed with this condition at 26, and I am currently 31 years old with two children 13 and 4. The symptoms started with real bad headaches that wouldnt go away no matter what I took, I was taking prescription drugs like loratab and oxy’s and they still werent working. Then one I got up and my vision was so blurry and the pain in my head was CRAZY that I went to the ER saw my doctor and she made some appointments for me to have test done and to see a neurologist, the neurologist is the one that diagnosed me with the condition and up until this day I still have it. I have had may be about 6 spinal tabs done to relieve the fluid and its to the point that I am looking at surgery. So it is very good to see that I am not alone with this condition, it is bareable some days and then there are some days that I want them to just take my brain OUT!
I was diagnosed with PTC in late 2007. I have been taking a water pill for a few years now. I have lost 70 pounds this past year and I am still having to take the water pill. How long will this go on? I want off this water pill and the PTC symptoms to go away! I am no longer obese.
I am thirty five years old and I was recently diagnosed with this condition about two months ago. I was fortunate enough to have caught it early enough that it did not effect my vision in any way, but I have to admit i am worried of what the end result will be. IS this curable? Or am I stuck with this condition for the rest of my life? So far I’ve already had two spinal taps and the pressure and pain seem to keep coming back. I’m only on diamoxx and so far i feel like it hasn’t really been working. Basically I’d like a bit of insight as to what to expect from this in the future….
I was diagnosed at age 29 and am now 59. My diagnosis was made based on severe headaches and pulsatile tinnitus. At that time there were less diagnostic options, so I had several spinal taps and other very uncomfortable diagnostic tests. After a year on diuretics and low sodium/low calorie diet, a LP shunt was installed. I have had no other surgeries in conjunction with the shunt, have had no further problems, and my husband and I had a child 20 years ago with no complications. I thank God for my health every day.
I was diagnosed in January 2008 at the age of 37, but had suffered for nearly 5 years non-stop, not counting the previous 15 years of “regular migraines”.
My neurologist made the diagnosis after a lumbar puncture, and referred me to a neurosurgeon, who installed the LP shunt. It has helped a little bit, but he warned me ahead of time that some people just have to live with the pain—-that the surgery is to save the eye sight.
I’ll admit I was overweight both at the time of diagnosis and the time of surgery, but I was normal weight prior to age 25, and I have recently lost 30 pounds now at age 40 (with another 15 to go and I will be back to a normal weight for my height). Whether or not that had anything to do with it I don’t know.
My neurosurgeon ran a test called a venogram prior to my shunt surgery. It measured the pressure around my heart. He said there is a correlation between the pressures around the heart and the pressure in the brain of PTC patients. Now that I have lost weight, he suspects the pressure around my heart has come down and the shunt can come out.
Have any LP shunt patients had their shunt come out, and successfully stay out? I have heard stories about revisions, etc., but none that involve not replacing one shunt for another.
I’m 39 and I recently spent 3 weeks in the hospital with complications from high blood pressure that i didn’t know i had. On the second day in I began losing my sight everthing went dark in 1 day. They tried 2 unsuccessful spinal taps and eventually placed a vp shunt in my brain to relieve the pressure. I gradually over the last 3 months have regained enough sight to do things at home , but I cannot drive , work , or do many of the things i used to do with my children. I complained to my Dr. for 2 years of migraines that were progressing in severity and frequency. I tried maxalt with a bad reaction (severe jaw and chest pain) and shots with no avail. Now with the shunt in place I don’t have migraines anymore. I used to have hair down to my waist , but they shaved it off. I got cogestive heart failure, kidney failure, and blind all from hypertension. I now eat a low sodium, low fat diet and fear having any reoccurance of the total blindness. some days are okay and some days like when i’m looking for something I can’t see to find or I spill my drink all day, or trip on the dog I just sit and cry.
I have been diagnossed with PTC since July, but have suffered with it for almost 2 years. It took forever for doctors to figure out what was wrong with me. After seeing 2 previous neurologists I made an appt with a new one. While I was explaining my symptoms to her a light switch went off in her head. She said she was pretty sure what was wrong with me, but she had to do one test to verify. She performed a LP and the pressure in my spine was elevated. She drained the fluid down to a normal pressure and told me it was a short term fix. Since then, my headaches have gotten much worse, and I am now experiencing weekness and numbness. I can hardly stand for more than a few minutes without falling. I am looking forward to another LP on the 22nd to relieve the pressure. I am looking into having a shunt placed, but would appreciate any suggestions on which type and how successful they are for people who actually suffer with PTC.
I have had my thryoid removed 2 times. The second being cancer, I take medication everyday for this. I am blind in my left eye and loosing vision in my right eye at a rapid pace. I have been having headaches that drop me to my knees. They tried to say migrains or cluster headaches until they did am mri. they found a cyst at the pituitary gland that they think is filled with spinal fluid. They called it PTC, said that being overweight was a result of this. Well I have had thyroid problems for the last 8 years with 2 surgeries that has caused me to gain weight, and now has caused me to have PTC. They are going to do a Lumbar Puncture to see how much pessure is there and see if it will empty out the cyst that is pushing on my optic chaism and pituitary gland. I am very furstated. I hope and pray that everyone else is have better results.
I am 29 years old, and have suffered from migraines since age 12. Valentine’s Day 2010 I began to get sick, weakness, headaches, fever, nausea, coughing, went to the ER, diagnosed with pneumonia, sent home with antibiotics. Found out the next day that a coworker had been diagnosed with viral meningitis. We had all same symptoms except my coughing. Finally on March 2, after 3 ER visits, 3 visits to my pcp, I made an apt with the eye dr. to discuss the double vision I had been experiencing for two weeks. Discovered my optic nerves were swollen (papilla edema), MRI, MRV ruled out tumors, so LP was performed. They had waited too long to find out if I may have had viral meningitis. Opening pressure was 28. I was started on Diamox, and it was gradually increased up to 5x a day (1250mg total) but i was still suffering. New neurologist, repeated all tests, confirmed diagnoses, changed me to Extended Release form of Diamox with better results.
Bottom line, I continue to suffer everyday. I am a Respiratory Therapist, working two jobs, attending school, raising two children, (with step kids every other weekend). I didn’t know the meaning of the word slow. But this illness taught it to me. I have to be careful how fast I stand up, how long I stoop to read over my son’s shoulder, and my every move must be calculated before it is executed or I run the risk of causing a headache or increase in pressure. The low-sodium diets are good, light exercise, etc, all good options for most people.
However, Dr.s, the general public, and those who have never suffered from a migraine don’t seem to understand the difficulty at which the simple act of getting out of bed can pose for PTC sufferers. Some days it is all we can do to open our eyes and focus on a spot on the wall. While my two LP’s and the Diamox have helped keep the pressures at bay (or at least tolerable) I am not a candidate for the shunt due to a CSF leak following one of the LP’s. Forgetting to take my medication just one time can lead to grave consequences later with headaches, nausea, pain. Something as simple as a thunderstorm can put me in the bed for hours on the drop of a dime because changes in the atmosphere can increase the severity of the headaches associated with PTC.
This condition is scary, and painful, and misdiagnosed, and dismissed simply because a dr cannot walk up and point to a mass on an x-ray, or verify the condition with a ‘set of results’ from the lab. We suffer because we are not believed, or are labeled med seekers in the ER because we can’t find a way to ‘prove’ our pain.
There are more of us suffering from this condition than you know. The woman who had viral meningitis a week before me, was also diagnosed with PTC and takes the same meds as I.
It is important to remember, you always have the right to ask for a second opinion, and the dr’s are not always right, find a way to make them listen to you, do not let your pain or problems be dismissed. You are your only advocate, and it’s your body.
I wish everyone all the best with their diagnosis, and hopefully one day very soon, PTC will be recognized and acknowledged more quickly and effectively.
My 16 yo son is having some of the symptoms of PTC but his optic nerve is not inflamed or does not have pressure behind it. He fainted about 4 years ago and then started having “migraines” when he played sports. This past year they increased in severity and frequency. He started taking doxycycline for Acne last fall. Now he has been having weird symptoms for about 2 months coinciding with an increase in sports training. He gets lightheaded alot – mostly when arising in the morning, or standing after sitting for awhile. He gets blurred or double vision, with eyes crossing sometimes, and tunnel vision or total vision loss (he calls it whiting out). The neurologist thinks it is a intractable migraine variant. He took several doses of Axert – made the symptoms worse. I asked for him to see a cardiologist as I wondered it this was all caused by some lack of oxygen to the brain. At first the cardiologist said he was dehydrated and if he tripled his fluid intake he could go back to sports. So he went back gradually, but when he got back to really intense training the lightheadedness increased. He tried to tryout for Varsity basketball and even though he got lightheaded and could hardly see he tried to tough it out as the cardiologist had said he was fine. He finally told a coach that he could not see and he was wobbling all over – the coach made him sit and then lay down. When I got to him he was white as a ghost, shaking uncontrollably, stuttering, clammy, and said he had spots everywhere in his vision. I took him to the ER where the doctor there ordered 3 cardiac type tests – chest xray, carotid ultrasound, echocardiogram and then a stress test on a treadmill the next day. All tests were supposedly normal, even though at the end of the stress test his systolic bp went off the gauge – it took 5 minutes of laying perfectly still to get it down to 240/60. He said he felt 10 times worse than that at the basketball tryouts the night before. The cariologist called me and told me this was normal and now the pediatrician wants to go back to the original diagnosis of migraine and dope him up on amitryptilene to prevent future migraines. I asked if this could be that the bp spikes during exercise could be causing all these symptoms -they will not answer me. My kid has missed 20 days of school and feels bad everyday. He never knows when he will get dizzy or not be able to see. He says he feels “less smart” and he is stuttering more frequently and cannot find words at times or remember things. Could this be PTC or some sort of weird hypertension? He has had an MRI and lots of blood work done as well as the cardio workup. We are thinking of getting a second opinion as no one around here will really listen or take this seriously.
Cindy-
I am a 22 year old college student and was recently diagnosed with pseudotumor cerebri. Your son’s symptoms sound very similar to the symptoms I experienced for two years. I used to be in great shape but started having heart problems, high blood pressure, and headaches. I had a normal MRI and cardio workup but I still felt terrible. I had doctors try to tell me it was migraines or anxiety for two years until it got so bad that we left the city and went to a clinic in another state. They did a lumbar puncture and had me diagnosed within days. You need to go do a doctor and make them do a lumbar puncture (spinal tap) on your son to check the CSF (cerebrospinal fluid) pressure. They can also check the CSF for infection.
I can’t figure out why doctors take so long to move on to a lumbar puncture; it is a relatively safe procedure and can give a ton of information about what’s going on inside a person’s skull.
I woke up one morning 8 years ago feeling so dizzy and had this “floaty feeling” i thought it would go away but never has. I’ve been to many doctors and neurologists and none can find out why i’m sooo dizzy. I’m light-headed all the time…the dizziness kinda feel like your floating..i get floaters all the time…has anyone diagnosed with pseudo tumor cerebri had these dizzy symptoms…cronically??? please help!!!
Hello,
I was just diagnosed with this condition on Friday. I was training to run a 5k when I started dizzy. The next day I got one of the worst headaches I have ever experienced. The headache was centered behind my left eye and temple. I went to the doctor and received migraine medicine that did not work. The next day I woke up and the left side of my face was paralyzed. I went to the hospital and was diagnosed with Bells Palsy and cluster headaches. I received medication and released but did not feel better. Finally I went to a Neurologist and he examined my eyes and noticed swelling. Ever since than I started being worse. It is hard to walk because my head hurts and I feel nauseous. At times I walk like a drunk because I feel dizzy and my coordination is off. I am starting treatment but was told that I am ready losing my peripheral vision. I am terrified of going blind and all these comments scare me because it seems like no one is ever cured from this. I do have the heartbeat in my ear and have had it for over 5 years along with migraines. Just wondering if any of you had the bells palsy symptoms?
Wow! I can’t believe so many people have the same condition as me. I was recently diagnosed with PTC. I am 33 years old and yes I’m overweight but I am also in the process of having weight loss surgery. I am planning to have the lap-band. My opening pressures were 60 and closing pressures were 17. I am so scared to death about everything going on with me. I have been having headaches for about 20 years and assumed they were migraines and nothing serious. I have been seeing an opthamologist for about 4 years for possible glaucoma suspect but in November she saw something different and told me I needed to see a neurologist immediately. I had a MRI & MRV and everything was normal. My LP was normal but the pressures were HIGH. I still have papilledema in my eyes and I have to be re-checked in a month. I am taking Diamox 3Xday but I am really scared and nervous because I have three children: 6, 7, & 11 and I am constantly praying for relief from God and for this medicine to work because the shunt sounds really scary. Does anyone have any additional insight into this medicine or the brain shunt and how long it takes for the medicine to actually work? I was informed that I have to have a repeat LP to determine if the medicine is working. The only thing about the LPs is that I get really bad spinal headaches behind them and those are horrible. I pray everyone on here is doing much better. I also pray for your healing and relief. Please remember that ALL things are possible through God who strengthens each and everyone of us. Peace, love, and blessings.
My then 4 yo daughter was diagnosed last February after failing the eye exam at her preschool. She is a rare case though as she has always been asymptomatic and has none of the risk factors or known causes, she is also outside the normal target age range for this condition. She is about to have her 4th spinal tap next week- her pressure has not been below 33. Currently she is taking 75mg of Topamax 2 times a day along with 30mL of Bicitra 3 times a day for her acidocis. I am feeling frustrated as we cannot get this under control and at her last Neuro appt last week the Dr noticed a different response with her left eye vs her right- hence the spinal next week. She is also going for an eye exam as they think she needs glasses on top of this- there is hope that the differing response is due to this. I have done tons of research and they all say the same causes and treatment- how do I decide when we have exhausted the meds and move on to surgery? According to the Dr.s one spinal tap usually clears it up- this is #4 and every time her fluids go back up even on meds. She will need repeated surgeries if I opt for the shunt but her Neuro Opthamologist didn’t feel she was a candidate for the sheath surgery at last appt as he felt she has been stable with the papiledema (sp?)- we see him the end of Feb. She is in Boston being treated at Mass Eye and Ear and Children’s Hospital- world reknowned hospitals………
Im 27yr old.
I was recently diagnosed last june, after i suffered a trauma to my right eye. As the docter was looking into my eye to examine the injury she just check my left eye to compare i guess, Like a child seeing something she wasnt suppose to, she immediatly jumped up and said their was a problem.. She ran to her superving doctor, and they both came running thru the emergency room pushing my bed in to quit and dark room. before i knew it there were 8 doctors examining my eyes. as they each took looks they mumbled amonst themselfs. I of course began getting scared, but curious at what they had discovered. I felt like whatever they were seeing must be so serious that they needed all opinions on what to do. To make a long story short, they finally told me what they suspected was wrong with me. At first they scared the crap out of me by stating that they were afraid that i could possibly have a tumor in my brain. they had me take an mri and catscan, and thankfully it wasnt a tumor. instead they finally told me on my third day there it was pseudotumor. they went back and fort on wether to give me a spinal tap, but finally they did and it was confirm. I came home and two weeks later i was back in the emergency room for sever headache, which felt like cluster headaches. I couldnt stand, move or even dare look at anything with light. With a cover over my head i sat in the emergency rm and i told the doctors on staff what my recent diagnosis was. For some reason the doctor didnt believe me and took a long time to medicate me. his reason was to track down my record from the previous visit. but really i felt that he lacked knowlege of my desease. Like many other doctors. If there were many doctors looking into this than maybe there could be a cure, but unfortunatly that isnt the case. Today i go to a neuroligist and an optimoligist. they have me on diamox, but some days i feel like it doesnt work. i dont support drug use, but the days when i have really bad headaches i take a Few pulls on a blunt ( weed, marijuana ) that really help with the constant trobbing in my head. i dont like feeling high, so i only take it it when im despret for relieve.
About 2weeks ago i stop using the diamox due to constant pain on my side, chest pains, rash break out that look like blisters and hurt on my back and legs, and 2 days of having blood in my stool. after telling my doctor my symtoms she prescribed a different med, which i cant remember what its called but is supposly suppose to lower my apitite and lose water weight. which sounds great to me.
My only request is that we as patients, team up and have some kind of fundraiser to help these doctors find more solutions for our problems. maybe theres specail foods that can lower the pressure. i say this because i recently found out that foods like carrots, tomotoes and leafy green salads can make the condition worse. now had my doctor warned me of this i woulndt have been eating them, which i now can say that i noticed headaches on the days i ate these foods. salty and fatty foods are also included in the list. and now that im aware of it, i always pay attention to my condition after eating any type of foods, so this way i know what triggers it or doesnt. i recently discovered that soda is on my personal list. This being said maybe they can finds vitimes in the healtier food that can lower the pressure. anyway for the future doctors , if any of you wanna run test or need a patient to experiment on i volunteer myself. of course it depends on the procedure, but im really up for finding a source and a solution for this.
Holla at me
kiss4delicious@yahoo.com
p.s. the injure to my right eye was fixed with a catarac surgery, but had i not been in the hospital for the trauma, i would have never found out that i had this condition. I excused the headache and blurry vision for years especially during my pregnancy when it was very frequent. ( even then my GYN didnt have a clue what was wrong with me and after constant complaint she finally refered me to and eye clinic, which i didnt go to because i hated to travel) Plus i always told myself that i needed to lose to weight anyway to feel better. who would have thought. Anyway, my right eye vision sucks and my left eyes blacks out for seconds atleast 2-3 time a day. Im so ready for this to be over already!!!!
ALSo there needs to be more advertising on this disease. its as bad a diabetes or an heart attack. it may not kill you right away, but it can disable you. please consider having some way to promote knowlegde of this disease. there are alot of obese and extremly skinny folk out there suffering and not knowing what their suffering from. Im willing to help and share my input. we have to team up people, have a marathon or something.
email me
kiss4delicious@yahoo.com
Our 11 year old daughter has been diagnosed. Has anyone experienced a lack of logical reasoning? Worried parent in Texas.
Thanks.
mhailey@consolidated.net
Hey you guys I just found out maybe a week ago that I have this disease I am a 21 year old college student whose sight was completely going in and out because my right had crossed and after having the spinal tap it immediately corrected my eye thank GOD. I take over 7-10 pills a day and i’m hoping everything will be OK and fine. It come from being over weight I weigh 188 pounds but I’m thick, my doctor is great. His name is James Corbett maybe you guys can check him out………………… I have to lose 50 pounds I have never been that small. the smallest I’ve ever been before college was 147 he want me to be 130. The meds I take work. The spinal tap hurts, the headaches were massive…………..
@Cyndi:Cyndi says: January 13, 2011 at 8:24 pm
Cyndi, My son was also diagnosed with Idiopathic IH when he was 4, he is now 8. We have only had 1 spinal tap and that was to verify the pressure level. I personally do not believe that constant spinal taps are the answers because, as you said the pressure always goes back up. My son has been treated successfully with Diamox 1ml twice a day by Dr. Susan Benes out of Columbus, Ohio. If you do anything I would suggest that you contact her for a referral in your area, keep in mind she is very busy and isn’t usually able to speak with you directly but her staff is knowledgeable and will be able to help you. She is the BEST OF THE BEST regarding IH . My son is now being weaned off of the Diamox and is down to having 1 MRI annually and goes to see Dr. Benese Semi-Annually. The best thing about Dr. Benes is her non-invasive equipement that can actually view the optic nerves with only a small handheld “wand” that as I quote my son “doesn’t hurt mommy”. Best of luck!
Ive had PTC for well over a year now, yes I am overweight and had the lapband done in 07, (didnt help much) I have had over 15 LP’s that have gone from every other month to monthly and now seem to last every two weeks, My pressure has been as high as 60 – 75 and headaches are a daily problem with me, I never seem to get rid of it, even after the LP it never fully goes away. I agree there should be more information or a support group for people with questions or share ideas I am looking into starting something like that. I lose my eyesight right before each LP thankfully it always comes back, I also have a problem with daily living (washing my hair in a shower is like be jabbed with 1000 needles) I cant go near my head the pain is so bad, Im on Morophine pills daily to control the pain which help but you get used to them. The ER is a big joke they laugh at you when you tell them your there for a headache, If anyone wants to email me to talk or questions feel free. its purpletigger1313@aol.com
My 6 year old son told his mom n I that his vision was sort of fuzzy from the back of the room in school. His mom took him to the optometrist and he alarmingly told her that he has a compressed optic nerve and to take him to the Emergency for an MRI. He had an MRI (he was not put under) and it came back normal. He has passed all of the neurological tests to rule out meningitis. We are having a lumbar puncture Friday. No one has suggested that is might be a pseudotumor except for a family friend (RN). We hope to learn that it is not too serious. He has never had so much as a sneeze.
I wish all good thoughts to all of you and your families.
I found out I had this on in Nov of 2009, I was 20, I am not 22. I have always had really bad headaches, but I was really never “over” weight. My eye are very bad also. I had my lenses removed when I was 16, so now I wear contacts, and glasses. Anyways, I noticed in my left eye I was seeing black spots, I called my eye doctor and he wanted me to come in imeditally. He looked into my eyes, and said they were very swollen, also asked me about my resent weight gain. I told him I gained about 60lb in the last year. Which put me at 180 or so, I am 5’6″. He said it sounds like I have pseudotumor. The next day I had an mri, spinal tap, and a ct done. I was put on 2000mg of Diamox a day. In December I found out I was preg. I stopped taking the Diamox, and my doctor put me on pain med for the headaches. I lost a little weight maybe 10lbs, I stayed like that through the whole pregnacy. I had my daughter, and after that everything seemed fine, I still had my headaches, just as bad but to me that was normal. now its Feb 2011, and its back!!! My vision never changed this time or anything, its just these headaches are so bad I cant move. I called my eye doctor and he has put me back on the diamox, and pain meds are the headaches. Three days ago, I started feeling dizzy, sick to my stomach, and very light headed to the point of passing out…its been this way now for about a week. I go to the doctor in a couple of days so I hope he has good news. Well I hope the best of luck to all of you, I know what your going through. The headaches are the worst!!!
Our 14 yr old daughter has been struggling with this since May of 2009 (that’s when she was diagnosed). Findinng doctors who are knowledgable in treating this disease has been difficult. Interested in hearing from other New Englanders who have had sucess, especially with Pediatrics.
mcipriano32@verizon.net
I am 27 years old and was diagnosed with Pseudotumor in September of 2009 which is coincedently PTC/ICH awareness month. I had suffered from headaches my whole life. My earliest memories where of pounding and pressure headaches as young as three years old. I used to describe my headaches to my mom as a feeling of my skull squeezing my brain through the cracks.
Oddly enough when I was pregnant I didn’t have any headaches at all, but due to my pregnancy, condition – hyperemesis gravadarum after my son was born the pressure of constantly throwing up the symptons of ICH came on full throttle. I started seeing black rings in my vision and I started hearing what doctors call cranial noises (I call white noise). The pressure was constant and I had this feeling as if I was “high” constantly. Though I could definately use to loose a few pounds now I was not an overweight child! I think this is a lack of knowledge on the medical field and weight loss is usually their first recommendation when they’re not sure what they’re dealing with. Please share with me and others of weight loss and pseudo tumor loss success and vice versa.
Like most I tried Diamox first, my intestinal tract did not agree with it, though I was loosing weight from it, I was not doing it properly…..I now take 100mg Topomax twice a day and it really is my miracle drug. Also through some trial and error, and paying attention to my own triggers (which you must do) I found that a low dose of Celexa helps to keep my daily pressure down. These aren’t the headaches that last all day , but last seconds or minutes and are usually more severe. Another major trigger for me-barometric pressure; pressure down, headaches, bad! As of now I see my neurologist every two months and opthomologist every few months with regular Visual fields test (aka start trek test) to make sure there are no changes in my vision.
Lets make this September the first walk for a cure!
hfayew@comcast.net Heather
-email me for questions or to talk
I am a 43 year old woman. I went to the bahamas in 1997,stopped taking BC pills that same month, and when I returned, My ankles began to swell really big. I made an appointment for that, but before I could get there, I started having terrible headaches. These headaches were so bad on the right side, that my hair began to fall out on that side and my vision was blurred. I even lost my sight on the street one day and walked into a planter. I was actually blind! Soon after, my face started to droop on the right side. My mom is a nurse and she thought I’d had a stroke. She helped me find a neurologist and he sent me for about 3 -4 Ct scans before my mom suggested that I have the MRI with dye. That would open up my vessels and make any problems easier to see. Sure enough, when the neurologist looked at the film he found it. Pseudo tumor. I had been given all the strong pain meds that you could think of but I couldn’t function like that. Once he saw the PTC, he immediately performed a spinal tap. I was in so much pain, I figured it couldn’t hurt that bad. Well, I didnt even feel it, my dr did a great job. When the fluid came out, he had to have a nurse grab another tube and a bucket. He said in 25 years he had never seen that much spinal fluid come out of anyone. I felt immediate relief. I felt as though my head weighed 100 lbs and after that, it weighed only 10lbs. I was given a water pill, which didnt work so he sent me to an ophthalmologist to look at the nerves behind my eyes and he said that it mimics glaucoma, so he prescribed Diamox Sequal 500. It’s time released, so it works much better than reg diamox. I have had a lot of ups and downs with this disease but it can worsen with obesity and I now know that I have obstructive sleep apnea, and my ophthal dr says that makes it worse too. They are all 3 somehow tied in together. I’ve gotten pregnant in the past but did not carry it because I was told that if I stopped taking diamox, which is extremely harmful to a fetus, I could lose my sight perm or even die. That’s the hurtful part for me. Anyway, I know this disease all to well. If you’re still getting really dizzy with the diamox, as the poster mention, taking too many miligrams can make you feel very dizzy and even pass out. It drops the pressure too low. It’s happened to me. I am currently taking the diamox sequal, trying to lose weight, going for another appointment for my sleep apnea (hate the mask and now they have a mouthpiece), and I usually get a spinal tap, in my dr’s office about every 6 months. I do experience some headaches but I reserve my pain meds for those terrible ones. Good luck to everyone. I know it’s a struggle, just hang in there!
Cathy, I read what you wrote. And when I first had this my hair was falling out also, but I don’t have any bald spots or anything….well when I got pregant it went away, well now I have ptc again, and my hair is falling out too. I never linked the two together till now…thank you for possible helping find out why I am loosing my hair! Another weird thing is that, my eye doctor looked in my eyes, said they are swollen…when I went to get the spinal tap done two weeks ago my presure was normal. So I am wondering if anyone has had that before?
I got diagnosed with this when i was 10. i am 19. I started having terrible headaches and back pain. I had an appointment after school to see why i was having so many headaches. The day of my appointment, i was walking out to recess when all of a sudden my vision just went away. it took a few seconds for it to come back. When it came back i had double vision. My doctor sent me on to an eye specialist and it took about a month to figure out what was wrong with me. I had a mri and cat scan. I went to one specialist that told my parents i made everything up. I was only looking for attention. After they found out what was wrong, i was put on medicine and after about a month it went away. So far it hasnt returned but im starting to have headaches alot more. Some make me sick and my back is starting to hurt.
My healthy 11 year old was getting a vision exam at 4pm and we were in the er admitted at 4:45pm. After all the scans and an MRI a spinal tap was with a 40 as a pressure. He has been given diamox twice a day. I know see a change, he is not looking as before. He was so happy and active. He never had any symptoms . I am so scared, I wish it was me instead. I have faith everything will be ok. Meanwhile, I have read several articles, but none answer if my son will have any learning disabilities. I have not asked the neuro. This just seems it is happening so fast. In one week I do not know if my son will be the same as before. I am a wreck when he is asleep and I am his happy mom when he is awake. I am so scared anyone have any suggestions.
Love my son so much.
I was diagnosed with PTC in October of 2010. Since then I have had a headache or severe migraine every single day. I am on 1500 mg of Diamox, 25 of Lasix, 10 of Ziac, and 100 of Topamax. I also take fiorcet, esgric plus, and amidren. I have had 6 lumbar punctures to relieve the pressure. I go about once a month to the ER because I can’t take the pain anymore. I hate going though, everytime I do, I am completely dismissed by the doctors and I am given a shot of demoral or dilaudid and then sent home. I feel like they think “oh she is back with a ‘headache’ for pain meds” I cannot keep going on like this, there has to be something out there for us. The pain is so intense and this is all very depressing! Good luck to everyone~
Devon,
Has your neurologist suggested a shunt. I know that most doctors do not want to do this unless all other options have been tried, My shunt was placed in April. I still have the migraine not everyday and I have not regretted my choice, But I have been lucky to not have to many side effects from it. Are you having problems with your vision? The best thing to do is seek a neuro who specializes in this condition, Good luck
I am not one who regularly “posts” comments… but, I was just diagnosed with this after a year of suffering acutely, and six years of suffering on-and-off. Ever since I had my 2nd child, I developed what was diagnosed as chronic sinusitis. I have had 2 sinus surgeries now, recently was on IV antibiotics for 6 weeks for a supposed bone infection in my sinuses, and still I got worse! When it got to the point that my vision and balance were so affected I had to stop driving, and hold onto walls as I walked, and couldn’t tolerate light AT ALL, and I could barely move my head and neck, I took myself to the hospital. They did a spinal tap and I FELT MY SYMPTOMS COMPLETELY DISAPPEAR! (Well, my back hurt!, but all of my head, face, neck, and eye symptoms were “magically” GONE). The relief only lasted for a while unfortunately, but… boy, was it great to remember what it was to feel like myself even for a few hours! and it led us to a diagnosis. I stopped taking Zoloft (50 mg) just in case…(which I’d been on since the birth of my 2nd child coincidentally). And for treatment, I’m taking Acetazolamide 250 mg (dieuretic) which seems to keep symptoms a bit reduced (though they are getting worse every day). I am eagerly looking forward to my next spinal tap – never thought that would come out of my mouth! Hope my story helps someone out there…
I just happened on to this site and I felt the need to leave a comment. I’ve only been diagnosed with ptc since November 2010 and it has not been an easy journey. I’m about to go in for my third lumbar puncture since November. I’ve been on diamox since after my first lp, but two months into it, it stopped working and they had to go back in. The same thing is happening right now. I just found out that I have permanently damaged my optic nerve from having the increased pressure, and am trying to figure out a way to deal with it all. All this and I’m graduating high school this may. I have to say, for all I thought I had it tough, its nothing compared to some of you and I wanted to thank everyone for posting their stories, because while it’s kind of scary to read what could happen to me, it’s so much better than not knowing. For the mothers out there with kids going through this, I know its tough, but it will be okay. The hardest part of dealing with this is seeing how hard it is on my mom. It may not get better right now, but it will get better eventually.
Hi, my name is Annie, I am 33 yrs old. I am currently at this moment experiencing the blurry vision and tingling in my hands and feet as a side-effect of the Diamox. I was diagnosed with PTC just last week, on Wednesday after being sent to a Neuro-Optomologist for re-evaulation. I have been having headaches that have been increasing in severity since about 2006, but at times they will come and go. I didnt have insurance at the time, so I never got medical help, until 2008, and I got a job with the gov’t. In 2008 I was taking up to 4-5(500mg)tylenol 4-5 times a day. The tylenol was only masking the pain, not getting rid of it. I had a few blackout periods and that made me worry, so i 2008 as soon as my insurance kicked in I saw a Neurologist who ordered an MRI, it came back normal except for a Pineal Cyst, but she said it was nothing to worry about and nothing to treat, and that it was just “Stress Headaches” but due to my career choice, my Field Office ordered my appt with a Neuro-Optomologist and she at the time found nothing out of place, but at a pre-caution, I was ordered to see her every year annually just to make sure no issues with the pineal cyst arose.
All this time I am getting more severe headaches, Summer of 2010 I decided by personal choice to lose weight and lost to date a total of 62 lbs …. and as of Thanksgiving 2010 started having grey-spots or blackouts in my vision and then at Christmas while visiting family, after my flight, I experienced one of the worst pressure headaches in my life….I just squeezed my head…..it hurt so bad, the next day and after i started the double vision and seperating vision where things i was looking at up close would seperate and I would see 3 of the same thing.
As usual, I thought it was stress, as it was diagnosed in 2008, so I ignored it.
I went to my scheduled yearly appt, and at first look the Doctor was like “hummm” and then left and confirmed with my chart…and came back and asked was I experiencing any new symptoms(due to my job I immediately said NO(aviation), but as she started to become more aggitated, I finally confessed to the symptoms…..and thats when she told me the severity of my case…that I had terrible swelling in both Optic Nerves, and if in the Optic Nerve Definately surrounding the Brain, so I was sent to have an immediate MRI(came back good), and Followed with a Lumbar Puncture(bad), I have read and the highest I have seen on here is 28 for opening pressure, and a normal Adult Pressure is 25, my opeing pressure made the Radiologist actually gasp, my opening pressure was 35 !! I was Diagnosed with PTC that next day, and started DIAMOX…
My symptoms have gotten worse and worse and I am just looking for someone that can explain to me that has been on this medication and what happened from like day one and did it get better, because when I called, she said give it time, the symptoms will get better…..
the blurry vision has actually gotten more often and worse….right now after reading I have some hope because I have no vision loss or anything permanent yet.
But I would like to know what are other options because this medication is seeming to bring more of the symptoms forward rather than get rid of them….I am going for another lumbar puncture in July and to be honest since it temporarily relieved the symptoms, I am looking forward to it….please anyone with experience with DIAMOX and other treatments for PTC or another name IIH…please it would be greatly helpful
ask your doctor about switching you to methazolamide. I had very bad side effects with diomox also, when I switched the side effects when down to almost none.
my name is Brenda ive been suffering with this for years I take 500mg 4x aday. I have so many side effects blurry vision awful taste feeling sickly all the tme tingling in hands face and feet. Ive had about 75 spinal taps to relive pressure ive had opening pressures as high as 38 headaches so bad ive been sedated for days in the hospital alot of pain meds and steroids I have a terrible time with this illness the Drs. recomend a shunt iam scared to have this done fear of having complications from the surgery or having the shunt causing problems so i continue to have spinals and deal with the diamox. Iam sorry i have know advice but you are not alone and maybe someone else out there can help us.
After having and MRI for headaches and confusion, it showed signs of ptc. I had a LP and the pressure was not high for the average adult but I felt great for about 2 weeks. Now I have such severe headaches every day. They wake me up during the night. The eye doctor performed a visual field test and it shows I have lost periph. vision. Neurologist didn’t think it was ptc, my family doctor believes it is. In the mean time my headaches are so painful and they last almost all day long. Need some advise.
I recently had to go to the hospital to see an opthamologist regarding an eye condition that my skin specialist thought I might have relating to my acne rosacea. However, after detailed examination it was confirmed that I did not have any relating conditions but during the examination the opthamologist diagnosed cupping of the optic disc but my eye pressure was normal. On first examination the opthamologist suggested I may have Glaucoma and sent me for a visual field test. I have just had the visual field test and have lost some peripheral vision to my right eye. I am now awaiting a follow-up appointment with the opthamologist for a pupil dialation and to be told my results. I have been on Tetracyclines for the past 20 years for acne rosacea and recently been put back on Minocycline. I recently had the following symtoms, dizziness, lost of balance, nausea, blurry vision in my right eye, severe one sided headaches, slight hearing loss and ringing in my ears. Should I mention all of these symtoms when I go back to the opthamologist as they do sound related to Psuedotumor Cerebi? I do 2 blood clotting disorders factor v leiden and protein c deficiency but I don’t think these conditions are related to my symptoms.
I am 38 year old female I have had pseudo for now 2 years I recently had weight loss surgurey to help me with this disorder i still suffer from headaches from time to time. I have since lost 60lbs since i was diagnoise with psuedotumor but still have some effects but not alot now wonder is it time for me to back down from some of my medicine?
I was diagnosed with this when i was 17- now i am 21. It sucks becuase there is not really a cause that a doctor can pint point to you. There are many different things that can be causing this so without a cause there is no true way to get rid of it, The disease is really uncurable. I have had spinal taps and I have elimated certain things that doctors have said might be it. But I am now on diamox. It works pretty well but the doctor said I will be on it for life. Make sure if you are on this medicine and you want to have a baby, you get off of it right away. Also my doctor has told me that I can not be on birth control with this disease and especially with Diamox.
Is there no one who has anything positive to say about the treatment for this illness ? My dauhter was just diagnosed and i need some input on treatment and prognosis.