marnian Posted August 8, 2006 Report Share Posted August 8, 2006 Last month, I was diagnosed with POTS and increased intracranial pressure with no known cause. The latter is also called pseudotumor cerebri and other names, but basically, it means your MRI/CT/spinal fluid looks normal other than the fact your opening pressure on a spinal tap is very high. Has anyone heard of these things being related? My doctors thought it was weird that 2 rare conditions appeared together since I was 23 and healthy/fit before this started, but they didn't know how to link them. On a side note, the way I ended up being diagnosed with both at the same time was that I saw my primary care doctor because my stomach was driving me crazy, she decided I was probably dehydrated and sent me to the ER. The doctors there admitted me because "something weirder was going on" and they ended up keeping me for 2 weeks, followed by a nursing home for 1 week. But I'm home now finally! Although reading your stories, it looks like I was lucky to be diagnosed so quickly. I have another dozen doctors appointments coming up so we'll see how that goes. Hopefully I can find the energy to make it through all that! Quote Link to comment Share on other sites More sharing options...
Jacquie802 Posted August 8, 2006 Report Share Posted August 8, 2006 Hi,I had the Intracranial Pressure w/ the POTS. The doc thinks the Florinef is what caused the pressure in my head...boy did i have lovely headaches with that..... I hope you find out the cause..Oh, also, welcome to the board! Jacquie Quote Link to comment Share on other sites More sharing options...
marnian Posted August 8, 2006 Author Report Share Posted August 8, 2006 Hmm...I started florinef after the intracranial pressure diagnosis. I hope that's not making it worse now too! Quote Link to comment Share on other sites More sharing options...
Jacquie802 Posted August 8, 2006 Report Share Posted August 8, 2006 Intracranial pressure can actually be CAUSED by Florinef..it was in my case....Jacquie Quote Link to comment Share on other sites More sharing options...
kmpower Posted August 9, 2006 Report Share Posted August 9, 2006 Could the POTS be caused by the intracranial pressure increase? The pituitary, hypothalamus, etc., are sitting there in the middle of the fluid, maybe getting impinged. Have you had an MRI or other hormonal tests?Without medication to complicate the picture, I would imagine that most kinds of POTS would have decreased intracranial pressure from the low BP on upright posture.There is a kind of cerebral edema when oxygen is low, such as hypoperfusion states, but I do not believe it is CSF related. I researched lightheadedness which is worse when the barometer drops (I get this) and learned about swelling of the brain at high altitudes.Well, I think you asked a good question. I hope you find an answer. Good luck with all the appointments.OLL Quote Link to comment Share on other sites More sharing options...
kjdube Posted August 9, 2006 Report Share Posted August 9, 2006 I have ICP and POTS and chiari malformation. Chiari is a known cause of increased ICP, which is a different condition from pseudotumor cerebri but can be misdiagnosed as such.According to my neurosurgeon, he has found increased ICP and POTS common in chiari patients. He feels Chiari may be a possible cause of POTS. There have been studies published on this also.http://www.potsplace.com/links.htm#chiari Quote Link to comment Share on other sites More sharing options...
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