Pseudo tumor headaches

[tricia21]

Greetings,

I was diagnosed with a pseudo tumor last year and the head pain remains in the middle of the skull and sometimes in other areas. The pain seems to be more prevalent when I bend down or move my head to the right. It is dull but everyday. I have checked with my neuro, had ct scans and an MRI, all normal. My doctor wants me to take topamax at night. I want to find out the root cause of the head pain not mask it with meds. Any suggestions?

[hopeless_in_ms]

Not to be discouraging to anyone. But i was diagnosed with pseudotumor headaches about 8 years ago, I've been on so many meds trying to help i lost count. I have went through 4 surgeries. No relief. Most people dont understand what the diagnosis means, including many doctors. Any new suggestions?

[jcmk1281]

I have had PTC (pseudotumor cerebri) diagnosed for over 9 years but have had symptoms for approximately 12.

First line of treatment needs to include mild weight loss approx 10% of total body weight can relieve headaches. The topamax is used to help deal with the nerve pain from the headache and like it was said earlier it can suppress hunger and thus loss weight.

You need to have a spinal tap to confirm what the intercrainal pressure is for adults it needs to be less than 20 or 200 depending on the increments of measurement. That should be done before any other changes are made, that will give your doctor a base line to measure progress during treatment.

Then as long as you are not allergic to sulfa drugs start diamox asap. When that is started you need to increase your potassium intake  because the diamox and any other water pill lowers that. The dose that some fellow patient have gotten up to is 3000 mgs daily.

And your eyes need to be checked by a neuro-opthlomologist to check for optic nerve swelling, papillodema and visual field loss.

-jcmk1281

[LifesAHeadache]

I am curious how Topamax is going to help this type of headache.  Has this anti-seizure med been shown to work with CSF headache.  How did he diagnose pseudotumor crerbri?  Did you have papilledema?  Are you seriously overweight and of childbearing years?

Diamox, is a mild water pill that can help greatly with this - and is used quite often.  It does actually help with the build up of CSF fluid.  Maybe Dr G could respond.  Topamax in higher doses dose generally cause weight loss - is that the thought?  Also, does MSG cause an increase in CSF pressure?

[Godofredo MD]

Hi.

If pseudotumor cerebri is indeed considered, a lumbar tap can be performed to check the cerebrospinal fluid pressure, an elevation of which is thought to be due to excessive amounts of CSF in the skull.

Topiramate (Topamax) was probably not intended to mask the condition but to relieve the pain that is experienced. Usually, conservative treatment is the first-line therapy for pseudotumor cerebri. It is only when this option fails that surgery is considered.

Hope this helps.

[Judy_77]

Check out MSG...start reading labels on ALL the food you eat...to do that you must go to www.truthinlabeling.org and find the list of what MSG is hidden in.
Knowledge is power.