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I have all the classic symptoms of high ICP (with childhood history too!) including dizziness, nausea, motion sickness, vertigo, ear aches, intolerance to environmental pressure changes, sinus infections that make me much much worse. Yet my doc isn’t convinced based on the brain and spine imaging. He suspects a CSF leak (but my high pressure headache/neck pain isn’t relieved after resting supine. It’s always there) though, interestingly enough, is not 100% sure of that either, so now wants to do a LP / CT myelogram. I am VERY RELUCTANT to have a LP.
I’ve been on Diamox for a month, was taking 250mg 1x daily but just raised it to 125mg/125mg/250mg to see if that helps. How long should I continue the diamox? I know some people are on it for a year before they stabilize.
Diana, the other snafu in all this is I have bilateral peri-neural root sleeve cysts (meninga seals) the entire length of my spine. These are filled with CSF. If one of those popped it could create pressure issues. Or they could be asymptomatic as I’ve undoubtedly had them my entire life. Maybe High ICP my entire life has pushed CSF out to create those cysts?
I suspect CTD, specifically EDS Classic or Type III as I have hypermobile joints.The last little piece is I’ve always had a large IJV that’s visible in my neck when talking or singing however since the dysautonomia started it is larger than ever. I also have the aortic pulse in my stomach. Scheduled MRI of blood flow to-and-from the brain as well as abdominal ultrasound to get a better understanding of what’s happening.
Should I move forward with the spinal tap?
I would appreciate some advice.
Blessings!
Hello, my friend. I hate to hear that you are dealing with this. 🙁 If you have a CTD, I understand your concern about the LP — been there! If you and your doctors can figure this out noninvasively, I’d be all for it! You know to watch your CO2 levels, right? The magic number is 22 or above to keep Diamox working well. You are right that spinal leaks causing low ICP are relieved when lying down. Sometimes symptoms of high ICP mimic those of low ICP. Instead, we can sometimes look for hints in the MRI’s, fundus exams, and — you guessed it — response to treatment. Hang in….
Thank you, Diana! I cannot tell you enough how much I appreciate you, your theory, your videos, your website – EVERYTHING you do for us all. You are so courageous and you are blessing people with your humor, grace, mercy and love.
For now, I think I am going to abstain from the LP, particularly because the neurosurgeon was dismissive of POTS/dysautonomia and he’s not even convinced it’s a leak. It’s his only resource, not necessarily the best treatment option.
The good news is we’ve ruled out a chiari malformation and they don’t seem to see hydrocephalus, (we looked at everything!) despite symptoms.
And yes, I will be watching potassium and CO2. I filled capsules with baking soda while watching a movie and take them daily.
May God bless you and your family abundantly!
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