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Aloha Dr. Diana,
Long story short, I’ve been experiencing symptoms that could be intracranial hypertension for the past four years. I’ve had 2 MRI, 1 MRA, TTT and tons of bloodworm. I also went to Mayo and was given the TTT that confirmed POTS but the doctors there felt it was also PPPD (Persistent Postural Perception Disorder). Treatment: an anti-depressant. It didn’t work; I still feel the pressure and back pain…heart still feels funky at times. Sooo…what I wanted to ask you is that my MRI both showed optic tortosity of the nerves and my latest eye exam showed an increase in the optic nerve size from .3 to .6 (.3 was when I first felt symptoms four years ago; .6 was just recently). I asked the doctors if I could have intracranial hypertension that is causing my POTS symptoms but they said no..I don’t have any other MRI signs and no signs of eye swelling. What are your thoughts? My latest neurologist wants me to try Topamax because my EEG showed sharp spikes in my temporal lobe…but no seizures…I often feel like I’m going round and round. Just wanted to ask your professional opinion. I’ve read your book and followed you online so I know you would recommend a trial of diamond but I am allergic to sulfa meds (bad reaction 20 years ago in college). Whatever guidance you can provide I would be most grateful.
Mahalo piha! Thankyou abundantly…
HI there! I can’t tell you if you have high pressure, but it certainly could be! One important point is that an allergy to sulpha antibiotics does NOT crossover to Diamox — so a trial may be possible in your case. Just be sure to keep your CO2 at or above 22 when taking it, OK? Topamax has a bit of a similar ingredient in it, which may help, but the additional ingredients may not be necessary for you and it adds to the cost and side effects. Please keep us posted! 🙂
Mahalo Dr. Diana for your response! In researching Topamax which my neurologist prescribed, I’m a big scared to be honest. He asked me if I was done having children because of the possible birth defects. Yikes! I asked about Diamox and he replied that if I don’t have papilledema that I couldn’t have intracranial hypertension even though my optic nerves have increased in size ever since I starting feeling like this. What are your thoughts? My plan B is to try my PCP and ask her to prescribe Diamox. What dosage should people start off on?
Again, Mahalo nui (thank you abundantly) for your help!
I guess you know that IIHWOP (Idiopathic Intracranial Hypertension Without Papilledema)
is real, not uncommon, and frequently missed! As far as Diamox dosages go, perhaps this video will help?
Gentle hugs… http://prettyill.com/videos/watch/lets_talk_about_diamox_updated
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