Is this part of Pseudotumor Cerebri?

[smokeater]

I have been recently been diagnosed with Pseudotumor Cerebri.  All my MRI and CAT scans have been normal and my spinal fluid was normal as far as bacteria etc. but my pressure was way up.  My superior optic nerves were shown to have been really swollen.  I have been dealing with this for years and they have just until recently told me that this was migraines.  But now I am experiencing new symptoms as well.  I at times am unable to talk.  I try to talk but can't but it only lasts for a few minutes.  I have blackouts that can last up to 30 minutes.  It's as though someone pushes a pause button and picks me up and places me somewhere else and then pushes play again.  Then there are other times where I have been having a conversation with someone and it's like someone pushes a mute button.  I can't hear anything but a loud Ringing noise and it's very painful.  It's like a very loud train in my ear.  But this only happens at the peak of a headache.  I get very disoriented at times.  I get to where I get nauseas and vomit uncontrolably and then I am so drained that all I can do is sleep.  I can't hardly hold my head up for hours.  And when I cough or sneeze or anything like that it just makes the pain ten times worse.  Is this part of that condition?  Should I be worried?  Should I get another doctor?  My doctor right now has me on diamox 250mg 3x daily, topomax 400mg 2x daily, welbutrin 150mg 2x daily.  He discussed having a shunt put in or the Eye fenestration done.  What is your take on all this?  Thanks Smokeater

[Stephanie3388]

My daughter is 14 and just been hit with the news She has Pseudotumor Cerebri and I am trying to find out more about this illness. She missed the last 4 weeks of school and I'm not sure she'll return this coming year. If you delt with this issue or know of a web site that I could learn more about the illness Please e-mail me.

[feelin'abitbetter]

i have PTC, and have had for a couple of years.  My doctors kept telling me to lose weight, which was extremely difficult.  I finally found something that has helped a lot.  Its not all that profound, but,........ I cut back my sodium intake to practically nothing. (no condiments, no processed foods, just whole foods with no added salt of any kind)  This allowed me to start drinking water (eventually) as long as I was taking my diamox.  Eating whole foods with no frills also makes it easier to lose weight and not overeat.  I felt better fairly quickly, and was motivated to continue because the headaches were gone more than present. Still losing weight, and still have some problems when i don't take my diamox, but by no means, no more daily headaches.  

Does anyone know the chances I will deal with this ongoing even if i lose a lot more weight?  I'm already 30 pounds less than when i acquired it (birth control pills), and currently about 25 lbs over weight. I'd like to be able to get pregnant down the road too. ??

[MBR64]

I've been suffering with chronic daily headache for around 10 years now.  I've tried numerous meds, but nothing ever works to relieve the pain.  I believe the pain is associated with TMJ disorder or MPD, however I do not clench or grind, but my jaw and face area are in constant pain.  The "main pain" is in my forehead, behind/around my eyes and temples.  This last year the pain is also moved to my neck area, where the muscles that attach to my shoulder actually do feel tight.  I've had numerous sinus x-rays to rule out a sinus condition, since the forehead pain is similar to sinus type pain (when I bend over, the forehead pain is tripled).  In fact, every MRI, Cat scan, sinus scan etc. are normal (although I have seen on the sinus scan that the one ethmoid cell is completely closed - but apparently no big deal to the ENT).

Anyway, besides the chronic pain, I also have what appears to be eustachian tube dysfunction, but the ENT's say my ears and tubes are fine, and that something else is causing the ear fullness and ear blockage.

I believe something is referring the pain to my forehead and eye area.  Is it possible that my trigeminal nerves are damaged?  I never had one headache or the ear problems before I had my wisdom teeth removed 10 years ago (they were impacted).

I am so tired of treating the symptoms and not the cause.  I have recently made an appointment with a Neuromuscular Dentist and a DO who treats cervicogenic type headaches.

If nothing ends up working in the long run, do the doctors at the Cleveland Clinic work under the philosophy of treating the cause, not the symptoms?  Also, I am currently taking nortriptylene again, and I've been taking 50 mg at bedtime for about 2 weeks now with no help.  How long should I continue med before I abort it if I see no improvement?

thanks for any advice

[debiey]

I have been diagonsed with PTC(psuedotumor Cerebri) for 3 years now. I have the headaches and the blurred vision spots. I am needing to know what the effects of marijuana somking will do for me, If it will help me or hurt..I have read that the thc in marijuana will reduce spinal fluid, which in my case is my problem, my spinal fluid is very high and it is putting pressure behind my eyes causing my eye cision to be effected. I have read studies where marijuana helps gluyucoma patients, which is not the same as PTC but the diamox that the neurologist put me on is alos used for gluycoma patients, which the diamox is horrible for me, the side effects are worse than that of the actual effects of the PTC. If you could help me with this problem that would be greatly appreciated. Also, any advice on a good weight loss program for people with pseudotumor cerebri would be appreciated.
Thanks.

[smokeater]

Can you please explain what an MRV is an what that involves?  I have never heard of that before?  What type of things does that tell you that other tests don't and why is that type of test important?  Is it possible to have a seizure even with taking that much topomax?  I don't think I was losing total consiusness because I asked my husband if I was sleeping and he said no that I appeared to be awake.  So I am not sure.  I just know that I don't remember how I got from point A to point B.  An yes I am an overweight female.  I am 5'5 and I weigh 240 and I am 25 years of age.  But I am losing weight slowly but surely.  It doesnt seem to be having any effect on my headahces though.  Not yet anyway.  Should it be?  Thanks again for your response.

[CCF-Neuro-M.D.-JT]

Blackouts where you completely lose consciousness and are really "out" (not just loss of vision) are not typical of pseudotumor. Seizure may be a possibility. Talk to your doctor about possibly getting an EEG for fuurther evaluation. The other symptoms could be part of the pseudotumor syndrome. Headaches are one of the most common symptoms.

Blindness is the most feared complication of untreated disease. If the vision loss is getting worse (make sure an eye doctor is following you as well as a neurologsit) then more drastic measures such as the optic nerve fenestration procedures or shunt may be necessary. Weight loss (if you are obese) is also important. Another thought is an MRI of the veins in your brain called an MRV to make sure there is no clot there causing the pseudotumor. This of course is very controversial right now in the neurological literature as to whether or not the venous clot is realy a cause of the pseudotumor, but nevertheless we almost always get an MRV of patients who have the disease. Good luck.