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Pseudotumor Cerebri aka Intercranial Hypertension

Category : Health, Wellness, Fitness

Type: Public Membership
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Founded: Oct 17, 2006 8:38 PM
Location: Austin
Texas-US
Member(s): 273


I designed this group in hopes of getting the word out about this disease in hopes that future generations will have more options for better treatment results. I hope that people can come here to discuss their experiences with this disease, to discuss current treatments and their effectiveness, and just to overall get support for once you have been diagnosed with this disease you are in for a bumpy road and you deserve a support system!



What is it?:
Intracranial Hypertension (IH) or Pseudotumor Cerebri (PTC) is a disease in which the cerebro-spinal fluid pressure within the skull becomes too high. There are two types of PTC/IH: Idiopathic (Primary) Intracranial Hypertension (IIH). IIH occurs with little warning and occurs when the cause of PTC is undetermined. There is also Secondary Intracranial Hypertension, which is when the disease comes into existence due to an underlying causes, usually another illness or bad drug interaction. The rate of PTC in the general population is said to be 1/100,000. There is about 12,000 people in the U.S. with it and that is about .04% of the U.S. population.



Symptoms and Treatment:
Raised intracranial pressure (fluid in brain) is transmitted along the paths of the optic nerves, causing the nerves to swell, which can lead to sudden loss of vision and blindness, this is known as papilledema, . Papilledema is usually the first noticeable symptom that people display, and when an optometrist notices it often during a routine eye check-up they usually send the patient off for more testing. The most common painful symptom is an unbearable headache that is not relieved by any medication. I tell people it is like a migraine four times what normal people expect that just won't go away. Some other side effects include: memory problems, stiff joints, inability to do common every day tasks, pain behind the eyes, and general vision problems. A lumbar puncture aka spinal tap is often done to relieve some of the pressure and/or to check what one's current pressure is at. Lumbar punctures are very dangerous, and doctors often won't tell you this. I personally had them mess up mine and they had to go back in and do what they call a blood patch, which isn't at all pleasant, to fix the hole they tore in my fluid sac on my spine. I have also heard of people being bed-ridden for months after a "bad" spinal tap. Diamox (a diuretic) is usually the drug of choice for treatment. It too has nasty side-effects. There are many other treatments and drugs that are used, too many to mention really. Little is really known about this disease and it is very unique from person to person. Some people will recover from it, some will keep having reoccurrences of it from time to time, and some will never be rid of it. If not treated, it can be a very debilitating disease that can lead to blindness or permanent vision loss.




*I just started this group so give me awhile to get it up and running!














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What symptoms are you suffering from now? (you can have multiple answers)
Headaches
Muscle Weakness
Pain behind the eyes
Weakness
Blurred Vision
Memory Problems
Stiff Joints
Bad Reaction to Medication
Lack of Sleep
Too Much Sleep
  
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What treatments have you done to help with your PTC?
RNX Medication like Topamax and Diamox
Lumbar Puncture
Brain Shunt
MRI, CAT Scan, MRV
CranioSacral Therapy
Change in Diet
Exercise More
Natural Herbal Treatments
I haven't done any yet
I don't plan on doing any
  
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