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Seriously! I have a 12 yr old daughter that has had head pain for three months, with nausea, dizziness, light flashes, and is worse upon awakening. Neuro-Idiot say she has a 1 in 10,000 chance of having PTC since she does not have papilledema!!*0* Oh, and she has also had the swooshing sound in her ear! I am so frustrated with arrogant doctors that won't listen! Funny how two younger doctors asked the same exact question upon hearing her symptoms...."Has she had an LP yet?" This neurosurgeon said he couldn't get an accurate pressure reading on her because she is 12. He tried to intimidate me by telling me he would have to drill a hole in her skull, and insert an intracranial monitor!!! Oh, please!! I guess all of the othe million nuerosurgeons in the world that use LP's are nuts, Huh???
Thanks for the article!!
Rebecca, did your daughter end up having this? I don't know what direction to go in. My daughter's had one for 4 months. The ped neuro suggested psychological and ruled out pseudotumor also by looking at her eyes. No migraine meds have helped. I'm trying to find someone else who has gone through this, and you're the first! Love to hear back from you!
I need help and guidance. My daughter is 11 and has had a "migraine" for 4 months. Please note I said migraine in the singular because it hasn't let up for a minute. We've done everything including hbot therapy. She also has RSD. I took her yesterday to a ped. neurologist who looked in her eyes and ruled out pseudotumor which I specifically asked about. She said she hasn't taken the meds that cause it. Any advice here? Does anyone have a Dr anywhere that might take a pediatric case--- in case this Dr can't find the cause of the headache? She said she'll go the psychiatric route if they can't find a cause which had me extremely upset. Thanks for any advice!
Frustrated mom!
Time for a new doctor!
When a Migraine lasts longer than 72 hours without at least a solid 4-hour pain-free period, while awake, it's termed Stauts Migrainous, and it needs to be broken. PLEASE read Status Migrainous - The Basics. There are many, many things that can be done to break such a Migraine. Often, an IV infusion of simple magnesium sulfate will do it. If not, there are other meds that can be tried. Also, sometimes, a steroid pack -- high dose on day 1, tapering down each day for a week -- will do it.
Also, as this SharePost points out, looking in her eyes for papilledema does NOT rule out pseudotumor cerebri. ONLY a lumbar puncture can do that. If her neuro ruled it out based on the eye exam, fire her sorry butt and move on to a new doctor. If you go to our directory of patient recommended Migraine specialists, you'll find a page specifically listing pediatric specialists.
Good luck to you and your daughter. Please let me know how things go?
Teri
I was first thought to have PTC when I went to my optometrist because I had headaches for so long. I had already had a CT scan and an MRI. My GP said it must be sinuses so I was on steroids and antibiotics forever. Finally I went to the eye doctor, thinking it was my last hope. He was concerned because I told him I saw shadows. He checked my optic nerve and said I had 2+ edema and I needed to see a neurologist right away. His receptionist called one and they didn't call back with an appointment, just for my insurance info. I told a friend of mine about the ordeal-she just happens to be a surgical nurse that works with a different neurosurgeon. He blew up my phone, leaving message after message. I didn't think it was that big of a deal because the other guy didn't call back and this was days later. I left work and went straight to his office for an LP. My opeing pressure was 45 cm/in3. He said normal was between 12-20. I was put on Diamox. I had several LP in the next few months. He said the only way to get rid of it was to lose weigh. I did. I lost 40 lbs, and the headaches went away. My vision has changed, and I have to wear glasses now. That was 18 months ago. I recently have been having headaches again, but I haven't gained any weight back. I have steadily lost weight. I am concerned because he said our next step was a shunt. The last thing I want is a drilled hole into my skull but it is affecting me at school and home. What do you think??
I am so tired of hearing drs using over wieght as an excuse for PTC! I have a 28 year old sister who when she first started having problems she was about 120 lbs if that.. at around 18 years old. She is now 28, she spend 360 days in a hospital one year due to infections, shunt rejections, brain surgery, vision loss and on top of it all bladder disease and she gained so much wait laying in there.. she went to close to 300 lbs. She they told her tohave gastric bypass. She did and is skinny again, but still very ill, current time she has been in hospital for 5 weeks frist surgery was to have the tubing moved off a nerve that she had to suffer froom leg pain and numbness, well she ended up with mrsa and staph ( of course not from hospital haha) right!! since that surgery they have had to sew her back up 4 times from spinal fluid leaking, neuro removed her shunt except left a small piece in her spine and it wont stop pouring spinal fluid. Plastic surgeon has gone in and irrigated with antibiotics and put in shark cartlidge it held for 2 days then started pouring again.. She is back to having pressure headache cant even stand up or sit up and eat without vision loss and pressure.. But doc is saying she odnt have pst. she knows her body and knows what is going on. Now the plastic surgeon wants neuro to remove piece of shunt, but neuro said there is no problem.. (she has a huge mushy fluid pocket in her back right now) but no problem ha! amazing. But fear of Meningitis, so they keep stalling.. meanwhile she is missing her neices graduations, her sisters babyshower and nice summer weather.. but they dont seem to care.. Now they are talking about removing a muscle in her shoulder and turning it around to cover her leaking back.. but that is last resort.. sooo irritating.
Also, my daughter is 18 and 130 lbs 5'8 and has ptc. luckily has not had to have a shunt yet.. her pressure normally hit 24-28 she has suffered with vision loss optic nerve damage, pressure, also has fibromyalgia. So she is not overweight and has it.
Can anyone tell me what is a normal and amnoral preasure is .My son is 15 and has had this since march. He is on his 3rd shunt. . we just had a tap do hours ago and the presure came up the tube to 18 is the ok.
Hi, Donna,
The "normal" range is usually considered to be 15 - 20. You'd really need to check with your son's doctor to see what range he uses. Also, what's "normal" for one person may not be for another. When I had an LP to check for PTC, my pressure was 23. My doctor pulled off enough fluid during the tap to put my pressure at 15. He said it would take a few months for it to buid back up. So, to see if 23 really was too high for me, he had me go home and monitor my Migraines and headaches for three weeks, then come back. The tap and fluid removal had reduced my Migraines by half, so that showed that 23 was too high for me, I did have PTC, and it had been triggering about half of my Migraines. At that point, he prescribed medication to keep the pressure down.
I'm so sorry this is giving your son such problems. His third shunt! Oh, my. Did his doctor try medication before doing the shunt?
Please keep me posted?
Teri
We have tryed everything. He started with the headach at the age 4 and just this pass march the try a tap. and he was 36+ and the took off and exter 20cc. and a week later he had his 1st shunt and aug was the2nd one and end of nov. was 3th. It was only at 18 last night when they did it. But he feels better. We are going to have a long talk with the dr.
36, yikes! Y'all have been through so much. When his pressure is down, how are his headaches? I'd hope that they're gone, or at the very least, much better.
Donna, it could be really good if you registered as a member here and wrote about his and your experiences with this. You'd get some support, and others would learn from your experiences. Not pushing you to do this, just suggesting. OK?
If I can do anything for you, I hope you'll let me know.
Teri
Just read through all the comments on this post. While I agree that we should be able to count on our doctors knowing at least as much as we do, I'd hate to have everyone with intractable headaches convinced that they have pseudotumor cerebri. Papilledema is evidence of intracranial pressure so an MRI and a lumbar puncture is indicated, keeping in mind that the opening pressure is what is diagnostic. The classic person with pseudotumor is a woman between the ages of 20 - 50, who has had a fairly rapid weight gain. Of course, there is an exception to every rule but in a prepuscent child, all other causes of increased intracranial pressure should be ruled out. I've worked in an ophthalmology practice for 28 years and I can say that at least 95% of the pseudotumor patients I've seen have fit the above description. I know that we as migraineurs are always hoping for that 'aha' moment that promises relief but sometimes we do have to accept that the pain is what it is and we may not know the cause/reason this side of heaven - of course, I, like you, will keep looking for an answer!
Hi,
I think when a doctor says they are a "headache specialist" they need to be well versed in all kinds of headache disorders and Migraine disease - period. Kind of like when people come to your office, they expect an expert eye doctor, not an optician who just dispenses glasses (however good they may be.) But one of the problems is that many "headache specialists" or neurologists, while fine doctors, aren't truly experts in any one area. It's difficult for them to be because they treat so many other conditions like MS, stroke, epilepsy and Parkinsons. So, I do expect my doctor to know more about my head condition than I do if I am seeing an expert.....see what I mean?
The thing with papilledema is - you don't have to have it to have IIH, and the only way to diagnose this condition, like you said, is with a lumbar puncture. In fact, Teri doesn't have papilledema, but I have "swollen optic nerves" which I think is a nice way of saying papilledema and we both have IIH. Both have lost weight, still have IIH.
I think more people may have IIH than doctors even think......and IIH effects more than just women who are "fat, fertile, and 40" as I heard one doctor say. Have you been to http://www.ihrfoundation.org/ it has lots of wonderful information on it.
Sue,
In the post, I said:
"...there is ONE test and one test only that can definitively diagnose or rule out PTC. That test is a lumbar puncture, aka spinal tap. When the lumbar puncture is performed, the opening cerebrospinal fluid pressure is measured. That is the definitive diagnostic test."
That information is correct, so I don't understand your comment, "keeping in mind that the opening pressure is what is diagnostic." That's what I said. You have to perform a lumbar puncture to get the opening pressure. That makes an LP the definitive diagnostic test. And I never said other causes shouldnt be ruled out.
The entire post was about doctors who say that people do NOT have idiopathic iintracranial hypertension withOUT doing an LP. That's all. I respet your profesional experience. I will share with you that in my ten years of working as a writer and patient educator and advocate, I have seen MORE doctos tell people they don't have IIH withOUT performing an LP than I have seen perform an LP to diagnose IIH or rule it out.
THAT is the point of this post.
Teri
Teri and Nancy: that's the problem with computers, you can't get any expression or tone of voice!
I was being facetious when I said to expect our doctors to know at least as much as we do - I obviously expect my doctors, especially specialists, to be top notch. And the reason that I stressed the need to know the opening pressure with an LP is that too many times I've gotten the report on results and it gave me the chemical breakdown of the fluid but not the opening pressure! I never denied that an LP is the only definitive test for pseudotumor.
The only point I was trying to make was that we get desperate for answers and solutions and I'd hate for migraineurs to be running out and getting LP's, thinking they finally had an answer - our medical expenses are high enough as it is. Teri, I appreciate all the hard work you do, helping us to stay informed. Sorry if my effort to be helpful had the opposite effect.
Sue,
ACK! You're so right about not being able to see expressions or hear tone of voice. I think Nancy and I both felt your frustration and took it the wrong way. Thanks so much for replying and straightening us out. 
Oh, my, you're so right. LPs aren't always the answer. Acutally, I'd think they usually are NOT. I'm just thankful that my doctor suggested we rule out IIH when I could identify only about 50% of my triggers, and preventives weren't working. He really expected to rule out IIH, not end up diagnosing me with it. Guess the joke was on both of us.
Yes, I expect my doctors to be top notch too. Where I get really disappointed with doctors is when they don't want to work together as treatment partners. I expect my doctors to make decisions not FOR me, but WITH me. I'm lucky that my Migraine specialists expect the same thing. Can't say the same for another specialist I see or my family doctor. Unfortunately, in a city as small as mine, options are limited. (I travel to see a Migraine specialist.)
Ah well, I suspect we could talk for ages if we got together.
Thanks again for replying,
Teri
my pseudo tumor cerebri was clearly caused by MIRENA birth control which was a symptom on foreign paper work,however several American doctors did not know that Pseudotumor Cerebri was a side effect. Unfortunately for me, mine had reached papilledema stage, now it is a matter of finding something that helps because I can no longer take Diamox.
Reading this article this morning really boosted my confidence! I started having headaches (that I can remember) when I was about 10yo, and was diagnosed with migraines at 19. They've steadily gotten worse over the years (I'm 25 now) until January 3, 2010 - I've had what I used to call a migraine and now just call hell every single day, and today is March 10, 2010. Two full months. My neuro of the last 3 1/2 years said the exact same thing - that it wasn't possible for me to have IIH because my eyes were fine, despite the fact that I've been seeing stars and shadows at alarming rates lately. He also tried to scare me into the fact that if I got an LP I'd spend three days in the hospital hooked up to IVs. I changed neuros on February 23rd and the first thing he said was that I needed an LP to be tested for IIH. Tomorrow's the big day and I'm so relieved already. Oh, and I'll only be in the hospital for 3 hours, not days.
I was told i have papilledema a week ago. When i seen the doctor yesterday all he kept saying was psudotumor. He will not tell me alot about my condition it's like im a burdon in his life. So i was wandering if someone could tell me a little about it. Will i ever see like i used to? Is it safe to have a child? I know the weight causes problems but idk how much will cause problems. How much weight should i loose? I am 5' 8'' and 192 pound. It is very fusterating because i cant get anybody to answer anything and if they do answer its with the words "we will just have to see." So please ANY answers you can give me would help.
INNEEDOFHELP
Wow! Teri, I so loved your comment on the definitive diagnostic procedures for Pseudotumor Cerebri....so much so that I was contorted with laughter...then I relayed your comments to the person suffering from the condition...it had the same effect on him. He had an LP done with an opening pressure of 33! (After the removal of 4 tubes of CSF, his headache, according to the hospital notes, somewhat subsided.) There was also a CT done with NO contrast....which found NO PROBLEM according to the report by the Radiologist! In addition to the reported ? NEGATIVE CT results?, the fact that his eyes were not examined was used by Social Security to verify their claim that he DID NOT have Pseudotumor Cerebri. The Pseudotumor Cerebri was just one of multiple medical problems cited by my son in law on a claim for SS Disability. So....I think that the Dr. that you were referring to, the Radiologist in my S-I-L's case, and.....the staff and Judicial Personal at SS should all apply at the fast food restaurant of their choice....far and away from a place in which they can cause harm and negative consequences to innocent people....most of whom are not well enough informed medically to catch them at the height of their ignorance.
Teri - can you speak to any connection to doxycycline and pseudotumor? My 16 year old son suffers from migraines. They are always preceded by auras. He has also been taking doxycycline in a low dose form for acne. The migraines have changed and now he has two different kinds. Sometimes he gets the classic migraine with aura. Other times he gets "occular" or eye migraines where he has bizarre vision and eye problems and no headache. He has had an EKG and a dilated eye exam to look at the optic nerve. His next test is to be an MRI. His eye symptoms are blurred vision and one or both eyes crossing. Once he has "blacked out" during this and come back a few seconds later. All events seem to be associated with intense physical exercise - he plays Varsity sports in high school. He is stopping the doxycycline immediately and starting a low dose of amiltriptimene while we wait until the MRI can be scheduled. Should I ask about pseudotumors and having a lumbar puncture?
Thanks for any help or advice you can give me.
C
Lucy,
No, I don't know of any connection between doxycycline and pseudotumor, but that doesn't mean there can't be one. Cases where intracranial hypertension care caused by something such as a drug make it secondary intracranial hypertension. For example: Too much Vitamin A can cause secondary intracranial hypertension.
This statement you made is something to take a close look at: "All events seem to be associated with intense physical exercise - he plays Varsity sports in high school." Sports and other exercise can be Migraine triggers. Take a look at Ask the Clinician: Preventing exercise triggered Migraines?
Certainly, it can't hurt to ask about pseudotumor, but I'm surprised his doctor isn't addressing the exercise trigger.
Keep me posted?
Teri
TGri,
See :Doxycycline-induced pseudotumor cerebri.
Tabibian JH, Gutierrez MA.
Division of Dermatology, Geffen School of Medicine at UCLA, Los Angeles, CA, USA. jhtabib@ucla.edu
Comment in:
* South Med J. 2009 Aug;102(8):873.
Abstract
Tetracyclines are a commonly prescribed medication for the treatment of acne vulgaris that are associated with pseudotumor cerebri (PTC). With doxycycline specifically, however, the incidence of PTC is very rare. A patient was using oral doxycycline and topical retinoids for acne, and within two months she developed PTC. This case illustrates that despite the rarity of doxycycline-induced PTC, patients and physicians should be aware of this possibility. Furthermore, in the setting of new-onset headaches or visual changes, early ophthalmologic examination for papilledema is recommended for early diagnosis.
PMID: 19204639 [PubMed - indexed for MEDLINE]
The visual changes that my son is experiences are very dramatic. His pediatric neurologist feels that stopping the doxycline is warranted as well as an MRI - scheduled for 2 weeks from now. Since your knowledge base seems to extensive, I thought you might have more input.
Thanks anyway.
Lucy
Yikes, Lucy!
Thank you so much. You're quite right that I DO want to know about this. I'll start tracking down a copy of that journal article so I can read more.
Your son is lucky to have you in his corner, right on top of things and looking for all the information possible. I really hope that stopping the doxycycline takes care of all of this.
As all of this plays out, if exercise continues to trigger Migraines, his doctor can quite probably prescribe some kind of preventive that will prevent man of his exercise triggered Migraines too.
Would you please keep me posted on what come out of all of this and how he's doing? I'd really like to know.
Thanks and applause to you,
Teri
I totally agree. I believe that those idiot doctors should do spinal taps on every single person that presents with a headache to rule out PTC, OR they could reasonable testing, treat migraine and if the patient fails to improve, return to do it in a few weeks. It takes months for PTC to damage sight and the real risk and pain of a spinal tap isn't to be taken for granted. The incidence of PTC is 1:100,000 in the population. The incidence of migraine is 16,000:100,000. Where do you get off with your internet education?
i dont believe i ever read that everybody who presents with headaches should have a lp...however i do see that if other test fail and drs r tryin to rule out ptc then an lp is the one and only sure way to rule it out...obviously u have never had to deal with the pain on a day to day basis of being treated for something other than that bc u dont show anything in ur eye exams bc i sure as heck have been there and wouldnt wish that on my worst enemy!!!!!!
i have to agree with u on the lp....i was treated with migraines for about ten years while i was dealin almost on a daily basis with horrid headaches and being stuck in bed. my doctor said lets try the lp just to rule it out well gooooo figure after ten years of treatin migraines my spinal fluid was more than double what it should be.. and being the lucky person i am every time i have a lp i have the leak and have to have the blood patches done ... i have also had 3 of the lumbar shunts placed and have all three failed so two years ago i went thru the ventricular shunting the last year has been hell i have been fired from 4 jobs now becuz i can have headaches that leave me bed ridden for months at a time and being in management that wasnt allowed so i am now on disability and am still having problems with doctors who dont know what they can do next to help the current pain i am dealing with... sorry i know i was rantin but wanted to share u r sooo very right that the lumbar puncture is the only way i got diagnosed with severe case and none of the drs or eye surgeons to this day can see it in my eyes
I love this. I used to live in NYC where I was diagnosed with PTC. I was dx. by the method of a spinal tap after having bad headaches and dizzy spells. I have no swelling of the optic nerve. Only the spinal tap told I had PTC. However, shortly after I moved. Looking for a new doctor, the doctor did an MRI and found nothing and ruled out PTC and I haven't heard from the doctor since. He didn't request my medical records or anything. I still suffer from headaches. Lucky, my PCP provides me with my Med still. But I will be looking for a new specialist, cause the one I had new shit! I'm glad to find post like this making people aware the Pseudotumor Cerebri is still a medical mystery to many doctors, who don't consult with other doctors who may be more familiar with this disease. I refuse to live in fear of blindness as my future!
Danny,
I hear you! I live in a small city. When I first needed a specialist, we drove eight hours each direction to get to one. It was worth it though. We maintain a listing of patient recommended specialists. That might help you. Take a look at Patient recommended Migraine and Headache Specialists. Hopefully, you'll find a doctor there.
Teri
Hi, I luckily ran across your site while searching for info on PTC. I am a 40 yr old female and I feel like I am living a nighmare I can't wake up from. I have had a history of headaches over the last few years but this last year they have almost been constant. I have had marked vision changes that come and go in degree, balance issues, strange sensations, neck pain, ear pain, a "pins and needles/crawley"feeling in my head and face. The last 3mo have been horrible with constant pressure, severe headache that nothing seems to help. My PCP started off giving me Tordol inj. and Lortabs, honestly I think this made it worse. Headaches worse the next week with eye pain, so she gives me steroids and topamax. She had me get a MRI. It comes back "abnormal", and she is concerned I have MS. Wants me to see a optometrist. Cant get to the optometrist before seeing a neourologist, who says I do not have MS , that the lesions on my brain and atrophy are vascular and probably migraine related. He increases my topamax and gives me flexeril and maxalt, tells me to get a nerve study done and repeat MRI in 6mo. I go home and headaches are not improving, and I wake up not able to see in my rt eye. I call a eye Dr. Can not get in anywhere till next day, go to ER. Well, by 10 am , vision is back but blurry. I wait till next day. I see eye Dr. She said she doesnt see anything wrong, but that pressure could have gone down. She is the first to mention to me PTC. I immediately went home and called the nuerologist, they called me back and the nurse said I did not have PTC, that the Dr. (meaning the Neuro) saw no problem with my eyes.
Well today I went for my f/u with my PCP. Still all the same issues, some increased. She did do more than the neuro and listened to me. She read over my lab work with me and the MRI again. I asked why I was having all the balance issues, of course she had no answer. She threw out many things, fibromyalgia, possible vit.b diff, even maybe I should see a psychiatrist. But she did say "well there is this conditions called psudotumor cerebri that is common in obese women ( yes Iam overweight) and you do seem to have all the symptoms , but your MRI rules it out. " Then I asked her " how does it show up on MRI"? She didn'''t really have a answer. Okay sorry, I know TMI, and I have rambeled on , but that is my questions. How do they rule it out just from MRI? I just dont understand why they keep treating me for migraines when my symptoms do not fit any of the migraine criteria and I am not getting better.
reneetami,
They CAN'T rule out pseudotumor cerebri with an MRI. An eye doctor can't rule it out either. The only test that can absolutely rule it out is a lumbar puncture.
Another issue that you may want to discuss with your doctor is that Topamax can cause some vision issues, and if you're already having vision issues, you may not be able to notice it if the Topamax causes additional problems. You can read more about this in Potential Vision Issues with Topamax.
Let me give you a bit of positive reinforcement here -- The person with the most at stake should be in charge. When that comes to our health, that's us, not the doctors. They should outline all of our options and make decisions WITH us, not FOR us. Do not hesitate to ask questions. You are entitled to answers. OK?
It may well be time to consult a Migraine and headache specialist. It's important to note that neurologists aren't necessarily Migraine and headache specialists. Take a look at the article Migraine and Headache Specialists - What's So Special? If you need help finding a Migraine specialist, check our listing of Patient Recommended Migraine and Headache Specialists.
I hope this helps!
Teri
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You go gurl! Why can't some doctor's just admit that they aren't "up" on migraines and refer their patient to someone who is?? I've met doctors like that in my migraine journey, when I didn't have sense enough to believe in myself and find another doctor. I've said a prayer for this poor woman in hopes that she'll find what she needs.
I love your slapping graphic, Teri!