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 dinagnosed on Januuary’9’2011, I dident really know there was anything wronge till i went in on my birthday and that was on Jan’6 i just thought i need some glass at the most but it turned out to be more than that, they had me do all kinds of test and told me that there was something causeing swelling on my eye and it was some kind of tummor yes and no i wasent scared so they wanted me to see another doctor they got me in so fast i mean the next week and there i went though mri and all kinds of test and thats when they told me that i had Pseudotumor Cerebri and at the time i was very scared i dident want to lose my eye sight. And the other reason i really was noticeing i was haveing problums was i couldent see very well and it was bottering me because i used to have good eye sight, But now i know why i been not able to see and this helps me, so back to the doctor i had to stay anight and have a lp done to tell you the truth my first one did not go to well they took to much spinal fluid off so i ended up afther going home going back to the hospital in a couple of days with a major migrain and throwing up thing was i dident have anything on my tummy so it was pretty bad they ened up doing a blood patch because they took to much spinal fluid off my spine its just something that happend hopefull it dont happend its not fun. The secone time i had a lp was much better i could mover arould i was not sick anmd this time since i got sick the first time the took less off and i also had different people so it worked out good. They are talking about me have one more lp hopefully thats all they told me the swelling is way down, i am going to the doctor today and they will be looking at my eyes so wish me luck. And to the ppl who is haveing it down just rember you are doing it to help your self and there might be some bad times but it will be ok if you need a friend im here for you i know how it is and i will be there for you though the whole thing.
I was diagnosed with BIH in October 2011 when I noticed that my right eye vision was a little off. It gradually got worse over a weeks period. It was like I was lookin through a fun house mirror. I went to an eye Dr who told me that I was fine and my prescription needed to be tweaked. After a few days of no.improvement and impatientence I made an appt w and eye physician and surgeon. The eye exam showed severe swelling of my optic nerves and disc. They immediately ordered an mri with and without contrast. The Dr told me that they had to prepare me for a possible brain tumor. I was a wreck. Fortunatly my mri showed no tumor but they believed I had bhi which I have never heard of before and the list of doctors I see I was the first person they treated with it. My spinal tap was done a month later, my pressure was 34. They brought it down to 13 after the tap although my pressure was lowered it did not relieve much of my symptoms. I see 4 different drs every month and am.on 1000 mg of diamox a day not to mention 7 other pills. It has taken 8 months to get my vision back to normal. My normal I mean the blurriness is basically a blind spot.
I still get severe migraines twice a week pressure headaches once a week and constant sinus pressure. I would love to hear how other ppl are dealing with rare and chronic condition. I’m suppose to lose weight but with constant pressure I’m extremely lethargic and have no energy. I went from a bubbly outgoing let’s have some fun to a girl who sees drs more than my friends and prefer an ice pack and my bed. Any suggestions to how others r dealing w this disorder I would love to hear. I have been campaigning to get this disease studied and research.
I was diagnosed about 3 years ago with ptc. i started noticeing horrible migraines that would last for days, and my vision started getting really weird. I went to the neurologist and she suggested that I go and had my eyes checked (since i always had 20/20 vision i never really went for yearly eye exams) What a coincidence i was able to get an appointment with the eye doctor the next day, and i was diagnosed with ptc. It was very scary and really hard on my mom because she didnt like hearing the word “tumor” at all. I then got my LP and was put on diamox. I only had to do the diamox for about 6 months and then the doctor weened me off of it. ( i guess i dont have that severe of a case?) but i’ve been ptc free now for 3 years (keeping fingers crossed) and i havent had any scares since then. hopefully it will never come back. It is really nice reading things from other people that have the same condition as you because now i dont feel alone lol. (because my doctor told me it was very rare) . but i have been ptc free for years now and hope it stays that way!
I started to have headaches and vision loss in 1996. I was diagnosed with PTC in 1998. After about 6 different lumbar punctures and several medication changes, and no improvement, I finally had shunt placement surgery in 2001. So many websites mention that this is linked with obesity, but for the record..I wasn’t obese until they finally figured out what my diagnosis was. I’m wondering if other patients have had some sort of head injury, which would make more sense as to why the doctors can’t find out a cause.
I too have been diagnosed with IIH or Pseudotumor Cerebri, on April 28,2011. Within 72hrs, I had an MRI w/ & w/o contrast, a LP, and seeing so many doctors i should’ve camped out at the hospital. Like many others, i had just thought i needed a strong Rx for my glasses, until they took a picture of my eye on April 21st 2011, and the lady stated that i needed to be seen immediately by an opthamalogist and a neurologist, and that I needed to be seen within a week at most. My right eye was so bad i was having blackouts and when i wasnt blacking out i felt like i was looking thru a kalidascope. May 4, 2011, i had an ONSF done on my eye. The surgery itself went well, it alleviated some pressure but it didnt work as well as they wanted it to. They keep mentioning Shunting, which requires brain surgery. Im kinda nervous, but at the same time the Diamox makes me sick, and produces acidetic levels in my blood which can cause the feeling of gasping for air. I have asthma, and that doesnt help me at all. Cus there are days i feel like i cant breath. Because of this they keep fluctuating my medicine, my CSF pressure was a 46, and thats way more than double of what it shouldve been. They say my status is “critical”. I am only 28, 5’7, and weigh 169lbs. None of this started happening to me like the migraines ive been suffering from for two years ever since my accident. I was wondering have any of you had any accidents prior to being diagnosed with this rare condition? Did you hurt your back or neck? Please let me know. Thanks
Hi, my name is Sarah. I am 26 years old. Back in January, I started having horrible, excruciating headaches. I went to the dr on numerous occasions and to the emergency room several times as well. Each time, they told me that I just had a tension headache or a migraine but never did any kind of test. They treated me like I was some kind of drug seeker or something and I have hardly ever been there.. Just last week, I went into the ER crying because these headaches had suddenly taken a turn for the worse. The dr. said he was afraid that I had something called pseudo tumor cerebri, which I had never heard of before. And besides he didnt do any kind of tests to confirm it. He sent me home with a script for dilaudid and referred me to a neurologist and for a spinal tap. I went and saw the neurologist and she confirmed what the ER docs suspicions were by looking in the back of my eyes where there was swelling. That same night I went in with a headache worse than any other and pleaded with the doc to please take the pain away and the drugs werent working. They did a spinal tap and my pressures were at 34. The next day I was in the most horrific pain ever. I couldnt sit or stand. The only way I was able to exist was to lay down. So I went in and I was actually leaking spinal fluid. So they took a huge vial of blood from my arm and injected it into my spine to clot the hole.. This a very seriously painful disease and is not at all something to play with. If I had to do it over again I would have made sure that the docs had actually ran some kind of test to make sure nothing was really wrong. If you think you might have this DO NOT let the doctors fool with you. They are messin with your life.
My daughter was born on Oct. 24, 1969, she was diag. in 2004. She died in severe and never ending pain on eith June 20 or 21st. They don’t know for sure. She was alone and not a soul to see until she was found on June 23rd. They did so many procedures on her it was sickning . She stayed in dark and quiet room always. She sent her son to live with his father because she couldn’t take care of him. She was an RN and since Jan1, 2011 she worked16 hours. The last 6 months were HELL for her. Why do you not tell how it can affect a person for real? Why don’t you tell how horribly a person can die with this. She left her organs for transplants but being dead so long they couldn’t use them. They could not do an autopsy because of decomposition, organs lost, body bloated. You know what it looks like, so do I. I was a nurse for 28 yrs. Always being told it would get better. You lied. Now tell these people what can really happen.
Pat MacDonald
im 39 yrs old and yes im about 80 pounds overweight for which the drs call obese. I have been struggling with headaches for the past 5 yrs n they were just getting worse to where I couldn’t go to work or just wanted to sleep and hope it would just go away. I have had numerous mris, xrays and showed nothing, so the dr was just giving me meds to stop the pain. I recently found a new dr. and he is great dr. terzigni listens to me and sends me for more testing along with sending me to an ear nose throat dr. With that the ent said that I have a cyst in my sinus cavity and its not causing my headaches and to see a neurologist, I was really hoping the cyst was the issue to where they would just take it out, but no its not the culprit. So I went to a neurologist Dr. Saleh and hes great he sent me for an eeg and for a Lumpar spinal tap. He knew right away what I was dealing with, but wanted to be sure. I explained to him that with my headaches I have been dealing with very occasional Dizziness to where I was off balance and felt like I was gonna pass out, then the blurry vision and that I already had my eyes checked and was told I was fine. I have been having alot of nausea, but was told thats because I also have Acid reflux. Also about 4 yrs now I have been complaining of neck pain and get told it was from a car accident I had back in 1993, n that it was arthritis. Now looking at the symptoms n all about this ptc. All of my complaints were this (PTC) the whole entire time and not one dr sent me to a neurologist until now. I am soo happy now that I know whats wrong with me and am getting it fixed and that I know I wasn’t going crazy with all the blurryness and dizzness I was feeling was real.. My dr wants to see me back in two weeks to see how my headaches are since I had the lp and have been fine since he said the fluid was clear and high, but was pissed cause the dr that did my test never checked the pressure. And now since my headaches are back I have to see whats the next step, I am hoping that medication will take care of it not really looking into getting surgery. If you are having any of these problems please tell your dr you want to see a neurologist and get these test done. I don’t want to go blind so I am doing everything I can to make myself well Im only 39 yrs old and don’t want to live like this for the rest of my life. God bless to all and good luck
I was diagnosed march 11, 2011. I just went to the eye dr for a routine eye exam no headaches no other symptoms or so I thought. I’m starting to believe that my neck pain is a symptom. I started having neck pain off and on 7 Years ago after a minor car accident. Lately I have started to get headaches I’d say maybe once or twice a month. Today I just found out my older sister has been dealing with this same condition for 20 yrears. I go back to the dr next week I hope this condition has impr
I was diagnosed in 1990 when I was 18 – I am now 38 and still have problems. I cannot take the diamox because I cant deal with the side effects. I do take lasix and go through long periods of time with headaches and then I will have long periods with no headaches. I have just learned to deal with it. I did have the optic nerve sheath fenestration and it helped. A shunt was discussed but for some reason after I have a spinal tap- I end up with spinal fluid leaking which causes a spinal headache so that has been decided against. I have other health problems and just deal with them the best I can. I feel for everyone’s pain – I know how you feel. I also understand that no one else including bosses, family and friends quit understand how this feels. I will be praying for you all!
my name is kim. I am 40 yrs old. I was diganosed in 2005. I have had numerous sugeries. I have a vp shut and a lp shunt . with too many revisions, I have had the eye sugery as well. my pressures are still very high. i developed artery arteritus in my face which caused me to take a very high dose of steroid for six months. which in turn caused me to gain 60 lbs. I have since lost the 60 plus another 40. I am still probably 30 lbs overweight. and constanly workin on it. I also have heart disease .. this past January I had a massive heart attack where 90 %of my right side of my heart had blockage. for which I had angeoplastic and a stint. my cardiologist said my chloesterol levels were fine. but my plateles are extra sticky which caused the blockage. which is a hereditary thing. everyone on my mothers side has heart disease. recently i have been informed by my brain dr that i have developed cysts also.Now everyone is up to speed on my case. I would like to say that ptc is a VERY VERY difficult disease to tolerate.it is very sneeky and drs act as if it is nothing. I personally would take ten heart attacks to one ptc headache. I pray everyday for drs to take it more seriously. an someone out there to please do the work and research to just HELP us who has been cursed with this horrible disease. it s constant worry. Is today the day this horrible pain will finally crush my brain? i apologize if I sound whiney or bitter. I guess I am angry. I spent two yrs in bed fighting this evil.Then one day I decided to take my life back. Some days it wins and all I do is lay around and suffer. But I try to have more days of living enjoying life than not. I hope i have help someone out there realize you not alone fighting this. but just keep fighting .cause life is a one time shot. so do it with everything you got!
I am 37 and have been dealing with this horrible disease since being diagnosed in 11/2009. In Oct. 2008 I had a complicated migraine which is when the problems really started. From that point forward I dealt with a never ending headache that would not go away no matter what medicine they gave me. I am on my third shunt and still that is not working and am having my 9th surgery since February 2010 this week. If anybody has any other suggestions I would love to hear them.
you all have me so scared for my son.this past winter when my son was 16 he just turbed 17 on the 11th he was diagnosed with this and he is now being told he may have permanent vision loss in his right eye.
Hello I’m Tamera,
I have some of you beat… I was dx with M.S. For the last 17 years instead of pstc. At first the Dr.s treated me as if I was crazy and just depressed. I had just give birth to my last child it was a hard preg. and delivery so many of the factors were also added to that…. I was given most of the M.S drugs patted on the head and told to check in once a year. I couldn’t handle the pain, vision problems, ringing in the ears or the weight gain!!! I got so tired of hearing the Dr.s telling me to lose the weight and I would feel better…. After everything the Dr.s did to me I had put on about 75 lbs. The biggest problem I had was if I did excersise I would become very sick… a day of excersise left me in bed for days sick so how do you lose weight when you feel like crap? Then this last year in a half I became bed ridden couldn’t do anything!!! No reading,writing,tv,driving all I could do was sleep and stay in a dark room. Ifelt like I was dieing…… And after so many years of feeling so bad I was starting to welcome it…. My children were mostly grown and I was so tired of feeling useless. Then my neuro sent me to Utah and the university there…. More tests and about 6 months later they gave me this new dx. And told me to research it…. That depressed the life out of me. Everything I found said that because I was over weight I had this illness… I was over weight because of all the meds the Dr.s. gave me. However the dr.s in Utah were quick to point out that I had NOT been over weight when this started…. I have been put on diamox, and have been on meds for about 3 months….. I feel GREAT!!! I am so sorry for everyone of you who feel bad and have cont. to have problems…. I still have some of the same problems as most of you but, after being bedridden for a year in a half and being told that my life was over I am so greatful for every day I have that is good. I have some bad days but, I have more good ones now then bad… I have lost vision but, I can read,watch tv, write and DRIVE again!!!! I hope this helps some of you to know that there are some of out there… I thought I was alone.
I am a 43 year old female and was diagnosed with this when I was 11. It was almost unheard of in kids my age. I was given steriods and spinal taps and would get better for a while. What I have learned was that the symtoms would come on strong the same time every year. I don’t know why. I would diet for that month just to make sure that I did not gain any weight. If successful, it didn’t come back that year. Now at 43, I take pain meds regularly and have the spinals about once a year. I opted not to have the shunt since there seems to be more complications with that route. I am able to hold a job, take care of my family and live a fairly normal life. This disease only cripples you if you let it. The only long term effect are the migraines. I was told that due to all the pressure behind my eyes, my optical nerves are warped and I continue to get daily headaches. Pain meds do help alot. I hope this helped.
I was told at age 5 my daughter had different looking optic nerves. The eye dr. watched her yearly for six years until last year when he felt it was time to see a neuro othamologist.He agreed they looked different but didn’t think there was big problem at that time. We saw him six months later and at that time did a MRI. The MRI showed that she has a khairi malformation but didn’t see any signs of increased pressure. She had a lumbar puncture. Her opening pressure was 31 and they removed 17 milliters of fluid. She was never over weight until 3 or 4 years ago. We see the doctor tomorrow. Anybody with experience with khairi malformation and pc? How are you being treated? Weight loss only or combo of weight loss and med?
My daughter is 8 years old, 4 1/2 feet tall and weighs 90 pounds. For the last 8 months she has had headaches that have effected her mood and physical activity. She saw an eye doc who diagnosed her with swelling of the optic nerve. We then saw a neurologist who requested an MRI, which came back normal. She had an LP today. Her initial fluid level was 22. We will speak to neuro in the next couple of days, but they have mentioned she may have PTC. The medication plan will be Diamox or Topomax. I am hoping the medication will help her feel better and, in turn, allow her to engage in more physical activity and lose some weight.
I have had headaches for years and tense muscles in my neck. They got worse with time. No vision problems or anything else. I went to the doc for a referral to get my knee checked. He put me on Naproxen and within a couple of hours my vision got screwy, my face beat red and my Blood Pressure through the roof. I stopped taking the Naproxen, but my vision and BP issues stayed. Naproxen did NOT cause it, but stimulated something and put it into full force. Amazing!! Go from perfect that morning, other than knee pain, to “vision blackouts” hours later. Went to doc, referred to cardiologist, then referred to Neuro due to vision and headaches turning into migraines. Also went to our eye doc. He stated Papilledema and Neuro confirmed. Had MRI, told today by Neuro that I have Pseudotumor Cerebri and did a spinal tap. 27 ml pulled out. They have me scheduled for an MRV now and put me on Diamox. He is also going to have me do another ST in 4 weeks if the Diamox doesn’t help. Last resort, a shunt. What I am concerned about, as there is way more than what I can put here… are there any other females that have an Copper IUD??? I am extremely curious due to the reports of Copper Toxicity and these symptoms caused by it. I have had nothing but issues since I got one 4 years ago. It is being removed soon. Thx and I am glad I have finally found others and know I am not alone anymore.
I was diagnosed with ptc and after reading all this, I’m terrified! I don’t want to live my life like this.
I was diagnosed at 25, a little over a year ago and it has been a bit of a struggle since finding out. The spinal tap did relieve pressure and helped with the headaches some. I’m a recovering addict so pain pills aren’t an option for me. My doctors have all been great working with me to find non-typical treatments. The Diamox has plently of aggrivating side effects which has caused me to take other medications just to feel normal. The tingling or burning sensations in my hands, feet, and knees were helped by Mirapex, which is used for restless leg syndrome. Diamox caused my iron and B12 levels to drop drastically so I take iron (with vitamin C to help digest it) and give myself B12 shots. To control the headaches, a Beta blocker commonly used for hypertension (high blood pressure) has worked wonders! After my initial lumbar puncture, my visual symptoms completely went away but have recently returned, along with the headaches. A check up with my neurologist has comfirmed that pressure has built back up and another LP is in my near future. Although it is a daily struggle that most people won’t ever understand, I have learned a lot from my experience for which I’m grateful. Trust myself, my doctors, and most importantly, have faith! A positive attitude goes a long way!
I was diagnosed with pseudotumor cerebri only about 3 weeks ago. but i have had the symptoms for years, I am ‘textbook’ for the type of person this affects. i.e. i am considerably overweight, a woman and child bearing age.
It started when i was 19 and pregnant with my son I had a constant ‘heartbeat’ sound in my right ear. my OB/GYN sent me to ENT for this where they ordered an MRI and never found anything, Untimately pawning this off on “having a greater blood volume when your pregnant”. after my son was born 9 months later the heartbeat went away, so naturally i thought they were right.
about 8 years later the ‘heart beat’ came back in the same ear. I, of course, went out and bought MANY pregnancy tests, thinking i must be pregnant again. Well, I was not. I mentioned this to my PCP many times, but it was always pushed to the side and never dealt with. I just lived with it, there was nothing i could do to make it go away. i could heat this gushing heartbeat 24/7 (it sounds like a heart beat through an ultrasound).
About a year and a half ago i started getting headaches. Mostly when i woke up in the mornings and always after focusing on something, like reading or sewing. and after about 10 minutes of looking at a computer screen. I am not one for going to the doctor, so i let this go, mostly because it was easily controlled with Ibuprofen. about 6 months after the headaches started i felt like i was loosing my vision, slightly. Things were just not as sharp anymore, plus the headaches when i would try to read a book were getting very annoying. So i scheduled an appt with an eye doctor, thinking maybe i need glasses. After his exam all he said is that i could use reading glasses, but not a strong strength. I trusted that he knew what he was talking about. So i got the reading glasses, but to have them sitting on my nose gave me an instant headache. this appt. was about a year ago.
To jumy back in time a little bit, I talked to my current PCP (this one i had never told about the ‘heart beat’) about my ear problem. she refered me to a local ENT doctor who sent me for an MRA, looking at the blood vessels in my head. That came back clear so he sent me to an ENT doctor in Portland, about 4 hours away. That doctor sent me for an CT of the brain, which again, shown no significant signs of anything. So ENT sent me to neurology in the same Hospital system in Portland, this was the first time i had heard of pseudotumor cerebri. He thought it was possible i had this, but not likely, since the only thing he was basing this assumption on was ‘a heart beat in my ear’. Well i went to Neurology and she stated that my right eye ball was bigger than my left and she was very concerned about the optic nerve in that eye so now i have been refered to neuro-ophthmology, which at that time that appt was 3 months away (appt on 8/19/11).
Well about 3-4 weeks ago i had to go home from work early because of a headache that i had for 2 days straight and NOTHING helped it not even vicoden. I was able to get in to see my PCP the same afternoon. She originally thought i was having a migraine, and was going to treat me for that until i told her that the vision in my right eye kept going blurry. She decided she better call the Neurologist in Portland. And ultimately decided to send me to the ER in a town 50 miles away. where they did an MRI and a LP, at which my opening pressure was 38 and they took 5 vials of spinal fluid.
I hope something gets figured out soon. Tomorrow is my neuro-ophthmologist appt. Wish me luck. If anyone has any suggestions or support or really anything, i would appreciate any information you have to share. my email is stenelson1009@gmail.com. Thank You.
Hello to my PTC Family, after reading all of your comments I am grateful and happy to know that I am not alone. But I feel so sorry for you all I was diagnosed at 16 and I am 25. All of you are correct I was told I was crazy, there was nothing wrong with me, I had migraines. By the time I had my lumber puncture I was almost blind. It is so hard to deal especially when those around you just don’t understand your pain and sometimes not knowing where or why this comes is hard. I have lost so much weight and still had the same symptoms. I know its hard but please hold..God will take care of us and he understands. If anyone needs support contact me at allisonlnelson@yahoo.com
I was technically diagnosed around 9 years ago. I had the stomach stapling surgery and the headaches went away. I have now been having the headaches again, and I am without medical insurance. The doctors do not fully understand what I am going through. I feel like a “drug seeker” because when it gets to a certain point I go into the Urgent Care offices. I am at my wit’s end and I am at a loss of what to do. The doctors in the Urgent Care centers do not like to prescribe pain killers, and these headaches do not go away on their own, not even sometimes with the pain killers. I feel lost and alone because no one understands what I am going through. My vision has gone down in the last 6 months or so to at least a quarter of what I am usually able to see. Has anyone had problems with the headaches returning after it does away? It has been years since I have felt like this and I just want to know that I am not as alone as I feel. My e-mail is kathleenvassar@yahoo.com, if you are out there and have had returning problems, please let me know. Thank you for reading.
omg i was diagnosed in 2010 jan with ptc all these comments and stories are scaring me to death!! I am just recently having problems again seen a neurooligist last week going back tomorrow for a ct again!! eye dr thursday lord i am praying i do not have to have surgery or go thru some of the things yall have been thru i am just turning 25 on the 25th and still got many years to live hopefully without all these medical problems…. i have cried reading some of these stories now i am scared to death!!!!
Trisha, I understand how scared you must be. I feel so stupid – diagnosed with ptc in (I think?) 2002…had a spinal tap for it…I’m really not sure but it seems like almost another lifetime ago. I’ve been being treated for migraines for 2 1/2 years now but with limited success (CT scan and EEG showed nothing abnormal) in easing the pain. Now just through simply filling out some paperwork today it suddenly occurred to me it might not be migraines at all, it might be the PTC coming back. Not looking forward to it but know I should see an eye doctor before it gets worse. :/ Just came across this site and yes these are some VERY scary stories…although it’s nice to have it here…I JUST turned 30 and I know how you feel Trisha. I know it’s pointless to say but try not to be scared. Praying for you! (And for the rest of us too). And ya know, with there being so many recent comments here I really think this disease affects MORE than the supposed 1 in 100,000…hope the appointment goes well.
I was diagnosed with PTC 17 years ago. I was and am obese. My body retains fluid. Why is unknown. I’ve been over weight my whole life. Soon after my husband and I got married we decided to have a child. I stopped taking birth control. This caused me to gain about 50 lbs in a few months. I had always had migraines, since I was about 12. But, after the weight gain I started to have headaches so bad I would just lay in the bed for days and vomit. The doctor just kept switching my migraine medication. This didn’t help. I started to have pain in the back of my head, neck and down my left arm, with feeling lose in my left hand. Severe pain! The doctor said it was a pinched nerve and gave me more medicine. Then my vision started to blur. So I went to the eye doctor. He said my vision was fine but, their was pressure on my optical nerve an I should have my family physician check my blood pressure. So I did and he said my blood pressure was fine, it was probably the migraines causing the blurred vision.This went on for about 6 months. I was in and out of ER’s and doctors offices. It was like they just kept guessing. Then one day I wake up with the worst headache I have ever had. I thought, I’m surely gonna die today. That same day all my periphery vision is gone. My hearing starts to go as well. So I call my doctors office and they tell me he’s not in. But they can fit me in with a resident doctor. Well, it just so happens the resident is studying to be a neurologist. He takes one look in my right eye and says I know what’s wrong with you. It’s not good. You have pressure on your optical nerve. Sometimes that can be a sign of a brain tumor. But, with your symptoms I don’t think it is. He said he thought it was either spinal meningitis or PTC. That scared me so bad I literally almost passed out. I was sent straight from my doctors office to the hospital to be admitted. Within an hour they had ran a MRI and diagnosed me with PTC. The next morning they did a spinal. Several more followed in the months to come. I was put on Diamox, Lasix and a stricked diet. I lost over 60 lbs within 6 month. I’ve regained most of my vision. Though I do have 20% periphery vision loss in my right eye. I was able to get off the medication for a couple of years. Then I had my second child. Afterward I retained a lot of fluid and the pressure shot back up. I got back on the fluid medications, lost the weight and had fluids drawn but, this time I wasn’t able to come off the meds without recurrence of symptoms. So I’ve been taking them for twelve years now. I still have bad headaches sometimes but, not as often and they’re treatable with pain medication. I thank God for the resident that diagnosed me that day. I honestly believe he was an answer to my many prayers. I still have my bad days, where my head hurts so bad I can hardly hold my eyes open. On those days I just rest and give thanks to God that it’s not as bad as it used to be. I pray for all of you who are suffering with PTC and I ask that you do the same for me.
Hi, I am 26 years old and recently (August 15, 2011) diagnosed with PTC. In November 2010 my PCP prescribed me Doxycycline for acne. About March 2011 I started having severe migraines. I went back to my PCP and he assured me it wasnt the Doxycycline and gave me some migraine meds (which I did not take) and sent me on my way. Lived with the migraines then all of a sudden my vision started getting worse. I started having blackouts, and vision loss episodes daily, all day. I made an appointment with an eye doctor and when they checked my eyes they told me I had something called Papilladema and possibly PTC and that I needed to be seen by a Neurologist and that it could be the Doxycycline. I quit taking the Doxycycline and went to the Neurologist on August 15th and thats when he told me that he believes I have PTC and prescribed Diamox. Unfortunately the Diamox has caused so many annoying side effects, nothing that I cant eventually ignore but at the same time it sucks. Since I started taking it 2 weeks ago I have tingling in my lower legs and feet, ringing in my ears, I can hear my heartbeat in my ears and it almost seems like I have had more headaches. I actually go for an MRI tomorrow. There hasnt been any talk about a spinal tap of any kind or shunt thank god. Truthfully I just hope I can take this Diamox and it will go away. I am scared, how bad is it really?
I was just diagnosed with PTC and am freaking out. I was diagnosed through finding out I have papilledma. I’ve been having headaches every since steroid spinal injections for an injury to my back. NO ONE could tell me why I was having headaches until I saw my PAC. She diagnosed it, I make her 3rd case in her career, and I am being set up with a neurologist. She didn’t tell me much about it, so I started investigating. I am praying to God I don’t go blind, as my eyes are already involved. *big sigh* But oddly enough, I have been trying to lose weight recently (up to 50 pounds) and now I’m diagnosed with a disorder where I HAVE to lose weight. Anyone hear of anyone losing their eyesight because of this?
I was diagnosed with pseudotumor nearly seven years ago. My symptoms came on suddenly when I was going through a miscarriage. I was nearly blind in both eyes for several days from what can only be described as sparkly clouds in my peripheral vision. I was also horribly nauseous and could not lift my head. Yet, the pain in my head got worse when I would lay down. I went to the eye doctor and luckily, he recognized that the hemorrhages in my eyes were likely due to pseudotumor. I was admitted to the hospital, where a lumbar puncture was performed and it was found that the pressure in my skull was elevated. I was then put on a program of weight loss, exercise, iron therapy because I was horribly anemic as well, and diamox as the drug of choice to keep the fluid off my brain. I’ve since lost weight and I live a healthier lifestyle, but still, no relief. My doctor now has no clue how to treat me and the vision in my left eye is getting progressively worse. I think more awareness needs to be brought to this problem because I always get the question: “Well, if your head hurts so bad, why don’t you just take a motrin or something?” No one understands that it’s a build-up of fluid that causes the pain, so relief only comes when the fluid is removed. So frustrating.
For the ladies in this forum who are worried about losing your eyesight…please try not to worry. With treatment and monitoring of your condition, it’s unlikely you’ll go totally blind, though, like me, you may have some permanent vision loss. I’ve lived with this condition for seven years and have managed to maintain most of my sight. Just live with an awareness of your condition, and if something seems more “off” or bad than usual on a given day, see your doctor right away.
I was diagnosed with PTC in 1997, I was have severe headaches and i was so dehydrated I couldn’t walk. After days of testing they thought i had spinal meningitis, during the spinal tap my pressure was so high they couldn’t believe i was no totally out of it. I had repeated spinal taps for 2.5 years, and it finally got to the point that the scare tissue was so bad it was hard to penetrate the skin. So in 1999 i had a shunt put in and for a year had no headaches. Then they came back and they revised the shunt, and still didn’t work, so we went in again and removed it and put a whole new one in. Here we are 14 years later and i still have severe headaches daily. I have lost 60lbs and they said that it would help, but now i believe they are getting worse. i have had really no vision problems, so hoping that stays that way.
Hey everybody.
I just want to say that reading all these stories scared me. But it also gave me strength. I don’t feel like I’m the only one out there anymore and I feel so blessed to have stumbled upon this website.
I’m 22 years old and I was diagnosed with PTC one year and 9 months ago.
I’ve always been overweight. I reached my personal heaviest (300 lbs) towards the end of 2009. I started to have headaches every now again and they started to get more severe over time. At the same time the headaches started so did the “Whooshing”. It sounded like I constantly had my ear against a seashell. It would sometimes keep me awake at nights it was so loud. I found myself taking excedrin religiously every day for the headaches. It didn’t completely stop the headaches, just lessened it to a dull throbbing at the back of my head. My eyes started to become really sensitive to lights. The light from a computer monitor would make me wince and passing another car that had their highbeams on would cause a stabbing pain in the back of my eyeballs. Then the vision in my left eye started to blur. A couple days later my right eye followed it. Soon after that I could hardly drive at night. I had to sit with my nose practically rubbing against the computer monitor to read what was on it. A week after both my eyes blurred, I made an eye appointment for a basic exam. (In Walmart no less.) I asked my mom to drive me there in case they had to dialate my pupils. I told her I wouldn’t feel comfortable driving back, but in all honesty, I was glad I didn’t have to drive period. She gave me a hard time and was genuinely upset that she had to bring me. She thought I was exaggerating. The doctor looked in my eyes after he made me read the chart. (The E at the very top of the chart, was one giant blur. I couldn’t distinguish anything about it. One big white blur.) He kind of shook his head and said he needed to dialate my pupils. Why, he wouldn’t say. After my pupils were fully dialated he tried to get me to read the chart again. (The E was still a giant blur.) He took one short look in my eyes before he (quite literally) jumped away from me and told my mom she needed to take me to the hospital. There was something wrong with my optic nerves. A short drive later we were sitting in the ER and another (older, more experienced doctor) took one look inside my eyes and said “I’ll bet two nickles its psuedotumor.” and walked away. Naturally, I freaked out because I head the word tumor. Shortly afterwards they did a spinal tap. After all the observations they released me, and said they would create a follow up appointment. I had just fallen asleep in my own bed when we got a phone call from the hospital saying they squeezed in an appointment for me at a specialized eye center in a hospital 2 and a half hours away. We rushed over there. The specialized doctor dialated my pupils and didn’t even have to look into them for 2 seconds before he pulled away and diagnosed me. He told me the basics of it, which I’m assuming we all know, and he said “That doesn’t concern me right now. What’s concerning me is that we need to keep you from going blind.” He proceeded to tell me that I was legally blind in both eyes. He said the surgery that would have to be done would be an eye decompression surgery. They had to go behind my eyes and cut a slit into my optic nerves to drain the fluid. They would do the left eye first. Then the right. He then said the most condeming thing I heard over the past 24 hours. “This surgery won’t cure your eyesight. It’s only to keep it as it is, and to prevent you from going completely black-out blind.” It all happened so fast. Before I knew it I was being admitted to the hospital and medical students were lining up outside my room to see a “textbook case”. I spent 4 hours getting an MRI done. Right after that I was prepped for surgery. With my left eye done, the doctor put me on steroids to keep my right eye from going completely blind before they had a chance to operate on it. It was such a large dosage that it could have been lethal and had to keep me hospitalized for a week to monitor me. After 5 days in the hospital I was released, and 2 days later I went back and had my other eye operated on. One week later, I could’ve sworn I was able to distinguish shapes a little better. With each weekly check-up with the eye specialist I was told that losing weight would cure me. Would keep it from ever coming back. I also started to see again. It was a miracle. Even the eye doctor thought it was insane and never expected for it to come back. My eyesight is almost perfect. It would be 20/20 but my left eye sustained slight damage and is one level beneath my right. I managed to lose 40 lbs. And gained it (and then some) right back over the course of a year or so. (Which I’m working on trying to lose again.)
I’m just so glad to find somewhere that offers support and it helps lend to the motivation to make myself healthier.
Please feel free to email me.
MissStephanieSlaughter@gmail.com
Or find me on facebook under Stephanie Misenti.
I haven’t been into see my neurologist yet, as they can’t get me in. All they have prescribe for “reducing fluid” is acetazolamide, which is apparently for glaucoma patients. Still headache relief and I am 25 days into this headache. I noticed yesterday that when my head is bad if I close my eyes my head will fall forward on its own. Also having more “brain farts” than normal. Read somewhere online there is actually meds for the actual headache. Is that true? I am thisclose to begging someone for a short of morphine. Something! My dark spots are moving out of my peripheral and appearing in my line of sight. They keep asking if I’m seeing things, I keep wondering if they means the spots that I swear are spiders or if I am hallucinating like people with real brain tumors do…?
Hi my name is Amanda I’m 20 years old about a little less then a year ago I was in excruciating pain and my neurological doctors had no idea why and kept telling me I was over reacting with how much pain I was in then a couple weeks later my vision was seeing double and my eyes were going diffreny directions that’s when I decided to go to my eye doctor who actually has awards for this disorder he had told me that I needed and imediate spinal tap or I would lose my eye sight soon then he told me the normal pressure is suppose to be around 15 and mine was well around 500 I could no longer move my neck and was crying from the pain I was in…I was not heavy my whole life infact I was only 220 for about a year before I was diagnosed I am now on diamox until I lose the weight …just be careful and if u have any unusual eye site go to the eye doctor they can look into your eyes and if the vein in ur eye is pullsing then u are fine.
Hello, my name is Amanda and I am 32 years old. I was just diagnosed 3 days ago and it has been awful. I have spent the last several years with “a-typical migraines with neurological symptoms” and it all came to a head two weeks ago when I would pass out after vomiting and would be unresponsive for 30 minutes or longer. I am on the medication and they have already discussed a shunt. My opening pressure was 39.5 and the person doing the LP only took it down to 30. I am so scared, worried and anxious. I am a single mom who is full of life and run a full life always on the go and this diagnosis, reading everyone’s comments and research has me utterly terrified. I haven’t been able to beat the headache yet even with morphine, the nausea is constant. My vision has completely changed. I went from 20/20 vision to 20/50 in the space of a few days. The blurriness is still present and my neck is sore. Originally they thought maybe menegitis, but the fluid was clear it is only a pressure issue. I know it’s only been a few days but I’m wondering if this is what my life is going to be like going forward.
I had this 10 years ago with no recurrence. I have not had any sight loss or other permanent damage. They did a lumbar puncture and I lost weight and have not had a recurrence. Keep your chin up!
I have had ptc since 2004, when I found out I was at a loss I had a headache that wouldnt go away even with many trips to the ER, eyes so sensitive to light that i would sleep in the closet so no light would come thru and then finally my eye sight doubling and being nausea. went to see the eye doctor (who found hemmorhaging of my optic nerve and an absent of pulsattions in my eyes)who then referred me to a neurologist I was given a spinal tap (with the starting pressure of 65 )my doctor gave me diamox and the nausea turned to vomitting and i was in and out of the hospital for about a year lossing 120lbs just from being sooo sick zofran ,reglan, marinol could not help!!well it seem that the sicker i got the more they increased the diamox intell i went to see a different doctor and found out that i was overly sensitive to the medication and was changed to lasix since then my symptoms have decreased (still having then occasionally) but im able to live with my condition now managing with only lasix and a couple of spinal taps a year !look to the future it does get better!!!!!!!!!!
How is it going with the acetazolamide? I have to take it 3x a day and it makes me get horrible “pins and needles” in my feet and sometimes my hands. My Dr. gave me potassium supplement and told me to eat food rich in potassium to stop this side effect. I no longer take the acetazolamide because the potassium did not help at all. As for the headaches he gave me something called Maxalt which melts in your mouth and tastes horrible. That didn’t help. Percocet is the only thing that gets rid of these headachs for me, but sometimes they don’t even help, it’s hit or miss with them.
Hello, I have have had horrible headache since 3rd grade. I got diagnosed in 8th or 9th grade. The doctors and my family thought I was faking. Finally, I went in to get contacts and the doctor slowly came in and told me that I had pseudotumors. I was so scared and terrified and my hand were shaking. I have been through a LP, various MRI’s and Cat scans. I have 3 doctors which will not communicate with each other. One says that I look like I’m getting better while the other 2 disagree or vice versa. I am now in 11th grade and I have tried Diamox and I have horrible side effects (which the doctors think I am faking.) They put me on it basically telling me that I am nuts. I know how you guys feel I am only 16 I don’t want to go blind. The part I don’t get is how could people look at my pain from the headache’s and just dismiss me like that? I had severe headaches everyday during 3rd through 10th grade but now I feel a little better. Expecially when I am not on the Diamox. I don’t have some many head aches. But I have HORRIBLE vision. Has anyone else had horrible side effects when using diamox?
I was diagnosed 10 years. Ago with pseudotumor now I’m 29 years old with 3 children I didn’t know the seriousness of this condition until 1000 mgs of diamox and 100mgs of topamax was no longer working. I started ha ving migraines everyday and pressure behind my head and my eyes felt like they were popping out of my head when I went in to the neurologist I told him o am getting worse I see shadows spots ringing in the ears etc please take my migraines away so I was ordered a lumbar puncture my opening pressure was24so the doc put me on another potent
diuretic and potassium pill I’m sick and tired of pills being shoveled down my throat THEREIS NO CURE the shunt is highly dangerous by the way folks start researching intercranial hypertension. Look up the shunt surgery. Watch the you tube viedos.
I was dx in 1994 w/ optical migraines – my vision later went in and out. I went to another dr who said I had a brain tumor and needed to get to a neurologist – at the time my children were 4, 2, and 3 mos. my neurologist did a tap and it shot out of the top – dx with OTC and given 2000 mg of diamox and 300 mg of topamax a day. I’d have taps two to three times a yr with him. I had papilledemia and permanent damage in my left eye. He retired and I found a new neurologist – a real quack! He did multiple taps, over 14 occipital blocks ( do not do) and over medicated me. I switched docs to a neurosurgeon who wanted to do a shunt. I refused as they typically need to be replaced every ten yrs or so. Kept up with the taps and mess and actually did an advanced nerve block in my neck. Finally in 2001 went to another doctor who did a “brain drain” on me. He put a tube in my back and let my brain drain for a week hoping it’d cause a natural hole in my lower back. It seemed to work. Over the years I’d get the headaches on and off, the visual disturbances and leaky eyes. But about three months ago it came back with a vengeance! Im back taking diamox 1000 mg for now and waiting to get into a neurologist. We moved to a new state during this time and it freaks me out going to another doctor. It scares me to death to have another tap done and to go thru this all over again but I know I have to. My left eye is very blurry, blood vessels popping in it all the time, headaches from hell again, neck pain, double vision and all the other funny stuff at goes along with this. there’s gotta be something better than this! I wish you all the best, keep your heads held high (well as high as you can with these headaches) and stay strong!
Hi. I’m Danielle. I am going through this whole thing right now. It started when my normal doctor told me I had migraines when I told him about my symptoms. And when the prescription he gave me did nothing I thought it might be a good idea to have my eyes checked, that maybe I just needed new glasses and contacts. And it all spiraled from there. I have been to an eye specialist and a neurologist now. They haven’t told me for sure that it’s IIH yet. I had the MRI with contrast, and my spinal tap yesterday. My pressure was at 52. Which my doctor said he had never seen one so high. So now I have to wait to hear what’s next. What is being on the diamox like? Do you ever feel 100% normal again?
Wow…after reading some of these stories i may have to get on a higher dose of antidepressants..i really didnt have a lot of symptoms…i have fuchs corneal dystrophy and thyroid eye disease…i got to Wilmer Eye Institue every 6 months..well i went in August and when the dr. Went to get another dr. I said oh shit! She said my optic nerve in both eyes was swollen and i need a ct scan and mri and pictures and field vision test and damn i couldnt keep up…i was so nervous i got diarrhea………mri and ct and mrv where all normal..so they sent me for a sleep study to rule out sleep apnea which can contribute to intracranial pressure…surprise! No sleep apnea…so now im seeing a neurologist who attempted to do a LP on Oct 28 and befor he even finished numbing me up with lidocaine i passed out cold for like 8-10 seconds..scary feeling..he couldnt finish..i was terrified..now hes gonna give me valium before the procedure…guess ill be a junkie before its all over with…help
I was diginosed in 93 and have had it for 18 years. I have an LP shunt. the put my first one in on March 1994 and I did have it replaced in 1999. My biggest side effect that I have with the LP shunt is, over-draining and low pressure problems, that means at times my shunt drains to much fluid and causes a spinal headache. I find that keeping myself on a routine schedule helps with the headaches from my shunt over draining. When I am under a lot of stress or something unexpected happens my body has a hard time adjusting to the changes. Therefore, the changes cause my body to make more fluids and my shunt draining too much, and I end up having more frequent headaches. Through the years I have learned to deal and cope with my pain and health problems this disorder causes. It took many years for me to except that this will always be a part of my life, and it will never go away. I work closely with my doctor to manage my pain, but I also find that meditation and relaxation also helps a lot to control the headaches as well. Just remember not to let this disorder control you, but remember you can help control it, and still live a healthy happy life.
I was diagnosed with pseudotumor cerebi in 2007. It came on really quick. I went to sleep one night fine and the next morning I work up and it was like someone had put a film over my right eye. My family doctor said it was an “eye infection” and gave me some drops but they did nothing to help. My mom was seeing an eye opthmologist for an issue and got me in to see in on an emergancy appointment. He checked my eyes and started throwing around a lot of possibilities “MS, Brain Tumor, Cancer” He got me in to see another specialist and I was diagnosed with PTC. He quickly put me in diamox (200 mg) a day, did MRI and CAT scan to make sure there were no outher issues. I guess I can say that I was lucky because my symptoms cleared up within a year and I was able to go off the Diamox. So far I have been symtopm free since 2008 but I still keep regular appoints with both doctors and I am constantly on guard for any and all possible symptoms.
I guess most people say they have bad reactions to the medication or that it doesn’t work for them. The only problem that I had with the diamox was a slight numb/tingling in my face and hands. Other than that, I do have to say that I feel normal and I am just learing to watch out for anything that could possibly be a relapse.
iam 34 and just found out 3 hours ago i have Pseudio cerebri tumor. i live in the most northern part of canada where we dont have many doctors, so i have two wait 3 weeks before the doc gets up here to give me some diuretics. they tell me how dangerous this can be for my vision and am a little worried that 3 weeks is too long to wait.i dont like the idea of having increased pressure on the brain and am curious to know if there are any other serious side effects of this. they can t get any fluid when doing a spinal tap (they tried 4 times even with a radiolagist) and are puzzled by the – dry tap. any advice on if i should wait or fly myself into the city and see another doctor is it not dangerous to have this increase. losing vision would be horrible but i could live with it, losing my life though worries me . should i be worried. good to know there are others out there . good luck to all
I also have PTC, and I am curious to know how they were able to diagnose you with this condition without being able to get any fluid?! When I was diagnosed I had already lost ALOT of my vision and when they did the spinal tap my fluid shot out of the needle, because it was so high. Maybe you should get a second opinion. I did. But to ease your fears a little MOST if not all Dr.’s will tell you to loose a little (or a lot) of weight. This condition doesn’t have any effect on the length of your life. by the way. Hope you get the answers you need
take care 
thank you tina for your advice and support. they diagnosed me i think because they had nothing else to go with. i just drove 12 hours to another hospital and again he tried the spinal tap and nothing came out. So i really dont think they know what to do. i am now on diamox – the side effects are brutal. but i just dont know what else to do. i am constantly on the computer trying to see if it could be anything else. anyway i go back friday for a ck up – we will see i suppose. i have already lost 10lbs, i am taking this very serious. did you ever get your vision back???
I was diagnosed with PTC in Dec 2009 it started in April 2009 I thought it was just sinus headaches (which I never had before) my ears was stopped up my right eye was giving me a fit it kept going in and out and I was swollen in the face but I just kept saying its nothing and then a month later I didn’t feel as bad but I noticed when I covered my left eye my right one had tunnel vision still didn’t go anywhere to get it checked kept thinking it will get better I had just had my 2nd baby she was 5 mths old so I still had the baby weight so I could have been over weight. I finally went to see an eye doc in Dec and she did a lot of test by then I was already blind in my right one and she was telling me it was PTC she thinks and the reason it can happen is being overweight, women childbearing age and hormones. But to make sure she was gonna set me up to have a MRI to make sure its not a tumor I was freaking out. She set me up with a neurologist and after all the the test it was PTC so I got put on Diamox 250mg 6xs a day and I lost 20 lbs and I stopped having the headaches and I’ve had 6 lumbar punctures. When they told me that hormones could be some of the reason I went and had my IUD taken out still didn’t help. Now I am 37 Wks pregnant with PTC and my Neurologist was not happy when I first told her she took me off Diamox and I went 2 mths without any fluid pills or lumbar punctures I was worried too but she checked into other meds and found out you can take lasix so I am on 10 MG of lasix and on potossum pills b/c it messed with that but so far it hasn’t gotten worse I’m the 1st patient my neurologist has seen with PTC and pregnant so she’s not sure what to do she has to research before she sees me but she is a great doc I’ve only gained 25 LBS with this pregnancy but with all the ultrasounds and going to the neurologist reg. they say he is growing normal maybe a little on the big side and I havent gotten any worse. which is a plus too.
I was told by all the eye docs I have seen that the vision in my right eye will not come back there is too much damage from where I went to long without haveing it checked it if I would have went sooner they could have saved the vision in my right eye. I hope this helps a little. and hope that if anyone starts having the symptoms they go have it checked asap I’m thankful to have sight in my left eye still but its hard not seeing out of the right while driving and doing normal actvities I’ve gotten used to it but I wished I would have went sooner I have 2 beautiful little girls and one boy on the way I would hate not seeing there little faces.
hey India, i know someone who had to take Diamox while they were pregnant, it was a low dose. it did not affect their baby as he is now 22 yrs old with no defects or abnormalities. Ive been on the diamox for over a week now and the side effects do get better or should i say we adjust better to them over time. i hope all goes well for you ,