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Pseudotumor Cerebri
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Pseudotumor Cerebri

I was diagnosed with Pseudotumor Cerebri 6 years ago by an eye doctor.I was having problems with my vision. I was sent to the hospital for a spinal tap to measure the pressure. At this point the pressure was 320. I was placed on Diamox. I could not use this medication. There were to many side effects. In the months that followed I received 6 other spinal taps. I was finally placed on different medication. (Furosemide 40mg, Nortriptyline 30mg, Etodolac 400mg 2x a day, K-Dur 20meq, Ketoconazole 200mg)
I take this medication until I begin felling better and then I stop. I can usually go for a year before I have to start taking the medication again. Last year I started taking the medication in April. I stopped taking the medication in September. My headaches started again around mid December. My primary doctor had me to start on all of the medications listed on January 6. I was refered to the Neurologist on January 28 because the headache had not subsided. He added another medication (cyclobenaprine 10mg) to see if this would help. I am also scheduled for a MRI on Feb 3. My symptoms are as follows. Severe Headaches, a noise in my right ear, and Pain behind my left eye. The headaches begin in the back of my head and spread to the entire head area. Can you make any suggestions as to questions I should be asking my doctor? Will this go on forever? I still have a minor headache even after all of this.
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Dear Ms. McAuley:

We do not know the etiology of pseudotumor cerebri.  However, it tends to express itself in overweight women.  So, if you have a weight problem, one way of helping things is to loose weight.  Some of the medications you are taking are not what we use, so I am not sure what to tell you about the medications your on.  Some people do not respond at all to medications and we have to place shunts to drain the CSF so it doesn't destroy the visual system.  There is a surgery called fenestration of the optic nerve that can be done.  Since I do not know your health status or life style and previous problems I am at a loss to give you any sort of prognosis.  This is a serious matter because your vision is at stake.  It does sound like you respond to medications, maybe finding the correct ones might help matters and doing the things to help, correct diet, loose weight (if this is a problem), etc.

Sincerely,

CCF Neuro MD
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Thanks for your response. I am 5 foot 6 inches and weigh 175. I am working on the weight. I am not currently experiencing any eye problems. When I was first diagnosed with Pseudotumor there were concerns for my vision. I had lost 95% of my peripheral vision. Once the spinal taps were done I recovered the peripheral vision. Since that episode I haven't had any visual problems. What are the medications that are normally used to treat pseudotumor?
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My daughter age 20 has suffered sever headaches over the last three weeks. She gets stroke like systems like tingling sensations starting at the toes and it moves up her left side.   Also on occasions her speech gets confused. The end result is the headache.  A CAT scan was taken and an MRI.  Everything was said to read normal.  She was hospitalized 4 days.  While in the hospital her one eye became crossed and she started seeing double.  She was released from the hospital with the diagnosis of Migraine.
We took her to an eye specialist who ordered a second MRI. It showed her to have a blocked vein in the top and back of center her head.  The eye specialist said get her back into the hospital and referred her back to her orginal neurologist.  He is treating her with blood thinners and pain medication although the pain medications are losing their effect.  When this started the spells would come on three day intervals.  Now it is more often.
Is there anything more we can do?  Out confidence level in her doctor is low. Do you think The Cleveland Clinic could help here more than she is now getting?  We live near Akron.    
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Thanks for your response. I am 5 foot 6 inches and weigh 175. I am working on the weight. I am not currently experiencing any eye problems. When I was first diagnosed with Pseudotumor there were concerns for my vision. I had lost 95% of my peripheral vision. Once the spinal taps were done I recovered the peripheral vision. Since that episode I haven't had any visual problems. What are the medications that are normally used to treat pseudotumor?
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Dear Cathy:

We usually start with diamox, if that is not tolerated then another diuretic.  However, if that doesn't help we usually try steriods.  If there is no relief then a consult with a neurosurgeon.  Usually, weight loss solves the problem.  

Sincerely,

CCF Neuro MD
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My daughter was diagnosed with pseudotumor over a month ago.  She began having severe headaches and was rushed to the hospital after she became incoherent.  The doctors treated the pressure in her head and it caused a small stroke because she became so dehydrated.  Then they put in a cranial monitor to release the pressure and treat the dehydration.

She now is in intensive care, but she talks very little and moves her eyes a lot.  I guess I would like to know what I should be asking or doing.  I am at a loss as to what to expect with this.  She is overweight and did not respond to the diamox.

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My mother saw a documentary on NBC dateline or nightline sometime back. It was about the swelling of Cerebral Tonsils. She said that while watching the program the woman on the show was listing her symtoms (symptoms). She said that the woman could have been giving the symtoms (symptoms) of PseudoTumor because the were so similar.  She has been after me to find out about Cerebral Tonsils. I haven't been able to find anything on the internet other that a definition of them. Can you provide me with information? Thanks in advance for your time.
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Dear Nancy:

The program dealt with Chiari I malformations.  This is where there is an anatomic abnormality where the cerebellum pushes it way into the spinal cord.   This can cause an increase in ICP and therefore give a picture of pseudotumor cerebri.  However, before the diagnosis of pseudotumor cerebri we usual image the brain and rule out the possibility of Chiari I malformation.  Pseudotumor cerebri is a normal structural brain where for some unknown reason there is too much CSF fluid causing increase ICP.  

I hope this helps.

Sincerely,

CCF Neuro MD
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Thanks for all of the information. I have quite a few questions for my neurologist. Please look at the comment in this section by dearJudy. If possible PLEASE respond to her questions.
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Dear Judy:

I am not sure what to tell you, although I am extremely sorry that your daughter had a small stroke.  If she was dehydrated, did she have a cerebral venous thrombosis or did she have an embolic event and an ischemic stroke?  Usually, we monitor the diamox treatment and will schedule frequent revisits and maybe even repeated LPs to see how things are going.  Recovery of function always happens in stroke if the patient lives (which it sounds like your daughter will do).  How much function regained depends on where the lesion is located, the extent of the lesion, and how good the rehab is.  I truely hope that things work out well for your daughter.

Sincerely,

CCF Neuro MD
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My 16 year old daughter was recently diagnosed with pseudo tumor.  They preformed a spinal tap to relieve the presure and she is now on diamox for treatment.  I would like to know if this condition has ever been caused by a head injury like a concussion or if it could be caused by a viral infection.  I am asking this because she was in an auto accident about 6 months ago and since then, has had headaches with some blurred vision.  The vision got worse which is how they found this condition. Please give me any idea as to what causes this and does it ever completely go away so that there is no more attacks?  I would appreciate any information at all.  Thank you.
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I have just been told by my doctor at the eye clinic where I have been receiving treatment for Iritis that he wants to send me for tests to establish whether my symptoms are caused by benign intracranial hypertension. He feels he is 90% sure this is what is causing my problems. I think he wants to rule out a tumor. My questions are, is the iritis and BIH connected?
What are the chances of this being a tumor?
Is hemmorage a concern to people with BIH?
My doctor has found some 'leaking' What is this?
Is this a life threatening disease? I do hope you can answer these questions and I would like to thank you in advance.
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Dear Donna:

The entity of pseudotumor cerebri is a diagnosis of excluding all other possible etiologies of increased intercranial pressure.  Certainly a trauma to the head could cause increased ICP by inducing edema.  So, if you doctor told you that it was not due to the trauma then at the time of the accident there was no brain swelling noted.  We do not know what induces ICP in pseudotumor cerebri.  Some cases have been reported with the use of antibiotics (aminoglycosides), high doses of vitamin A.  There is an association with overweight body habitus.  Usually the diamox helps, but we always suggest that the patient loss weight if he/she is overweight.  It can reoccur, but this usually doesn't happen, but we have seen many cases that reoccur.

I hope the diamox cures your daughter.

Sincerely,

CCF Neuro MD
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Could you please answer my queries on the 19/02/00 regarding Benign Intracranial Hypertension?

Thank you.
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After being on diamox for almost 2 weeks before I had my first LP, my pressure was 450.  I'm 16 and my neurologist wants to up my LPs to once a week and give me a higher dosage of diamox because the pressure has increased behind my eyes. Right now, I'm taking 500mg 4 times a day.  Is there a possibility that I could overdose on this stuff?  My doctor wasn't sure and my local pharmacist has no listings but the daily amount listed was on two.  I want to keep my vision and I've lost 20 lbs. since being diagnosed in early January but I'm afraid of taking too much meds.  Do you know of a maximum dosage? Thanks.
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Dear Beckie:

We routinely do not use that high of a dose.  If you are having side effects then the dose is too high.  If you do not get relief within a month the medication is not working.  Body habitus changes such as weight loss is the best method to getting the ICP down.  If after a month the ICP is not changed then you need to think about other medications or shunting.  This is a very serious condition, especially for your vision.  Talk to your physician about your medications and treatment.  Serial LPs are okay, but this is not the answer to the problem.

Sincerely,

CCF Neuro MD
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I was diagnosed with Pseudotumor Cerebri in August 1999. My openibg pressure for my LP was 44. I had another LP in September 1999 and my opening pressure was 31. Each time my doctor removed approx. 30cc of CSF. After the first two LP's I felt good and did not have any more symptons. I am on a diet and have lost 60 pounds and am walking 1-1.5 miles 2-3 times a week. I take Elavil 100mg. qHS for miagrane propholactic and Lasix 20 mg. QD for the Pseudotumor Cerebri. I chose not to take steroids or have a VP shunt.

Here's my question. About a month after the 3rd LP in January I started having severe headaches and vision changes just like I did before I had a LP. Is it unusual to have your ICP go back up that fast? If so, what could cause that to happen?

Thank You,

Deborah Hamilton
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Dear Ms Hamilton:

Sorry to hear about your problem.  Usually the headache and visual changes are a sign that your ICP is again increased.  What we worry about is the loss of vision.  Sometimes, the medications do not work or they stop having a beneficial effect.  I would call your neurologist and let him/her know about the returning symptoms.  Usually, with weight loss and medications the problem resolves.  However, we have patients who required optic nerve fenestration and some VP shunts.

CCF Neuro MD
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