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Living with Intracranial Hypertension, DBS

I was diagnosed with Intracranial Hypertension 5 years ago. This condition is where you either produce too much spinal fluid, or don't absorb it well, and it causes raised intracranial pressure, which can lead to blindness. It causes severe headaches, neck pain, tinnitus and as I mentioned, the risk of losing vision.

Tired of medication

Aug 14 2010

I am so tired of taking drugs. Diamox, lasix, oxycodone, potassium cl, they have all been with me for too long! I wish I could just try weaning off of all of this stuff and see if my condition staysthe same, or gets worse. It is all playing havoc with my stomach, bringing on a whole new set of discomfort to deal with. I see my neurologist in a month, and I think we have to discuss options. I want to feel like me again, but it has been so long, I don't remember what that feels like.

Previous diary posts by DBS:

Water water everywhere!

Comments (4) Add Comment

written by EmilyR, August 15, 2010

I can certainly understand your wanting to get off all the drugs you mentioned and I would certainly let your neurologist know what you are going through. My daughter has been on many of the drugs you mentioned along with a host of others for her NDPH and also migraines. The bottom line is that none of them helped and most did more harm than good. She would not put up with the serious side effects with no relief. It would be one thing if the drugs were helping you and you could weigh the advantages against the disadvantages. In the end you are the one who knows your body and you are the one in charge of it. And when you don't feel like yourself it's time to question what the drugs are doing to your body. Best of luck. I hope you find something that helps without the side effects that make you feel so bad.

written by DBS, August 15, 2010

Thank you so much for your kind words! My only concern is that my optic discs will swell again, which is not good, but I would at least like to try and see if they remain stable. The stomach issues are getting out of hand. I hope your daughter found some relief!

written by hickmanharding, September 28, 2010

I was diagnosed back in 2005 and I am on my 7th shunt My I was on fiorocet and diamox, lasix and a few others when i went to my nuero and he put me on marinol it was the best choice.It has saved me from many spinal taps.It took me about six months to figure out that if I took the fiorocet and marinol at the same time that I would usually feel some relief within 10 to 20 minutes.When you feel like drilling a whole in your own head thats the breaking point I'll take marijuana pills anyday!Plus it gives you the munchies and helps settle your stomach.

written by DBS, September 28, 2010

Interesting. I know another girl that used it too, and had good results. Something to discuss at my next appt. Thanks!!