Idiopathic Intracranial Hypertension (pseudotumor Cerebri)

[Katty]

I was recently diagnosed with this condition and wanted to get some feedback. It's essentially what it sounds like- pressure inside the skull increases for no apparent reason. Doctors don't know what causes it, though risk factors include: being overweight (check), taking Vitamin A (check), taking thyroid meds (check), and taking cycline antibiotics (check). If the condition worsens, it can cause vision loss.

Inerestingly, the medication that helps resolve and/or keep the issue in check is acetazolamide (diamox).
The protocol is: Get an MRI to make sure it's not a tumor, get a spinal tap to relieve some pressure, and then take diamox.

Anyone have any thoughts for protocols or things that have helped? I'm not having much luck with other symptoms overall. Been feeling stuck for a while.

Can't believe I'm mentioning his name, but Jack Kruse surmises, based on Gilbert Ling's work supposedly, that the condition is caused by a dysregulaiton of Vitamin A in the brain from excessive blue light. Doesn't sound too far fetched that blue light might worsen the condition. I'm thinking I should be more diligent with wearing my blue light blocking glasses at night.
Do people wear their blue light blocking glasses during the day? I work at a computer all day so it might be useful to wear them during the day too, but will it mess up my circadian rhythm to wear them during the day? Is it a problem to put them on for a bit while I'm at my computer, then take them off while I walk around?

Thanks in advance for any thoughts.

 

[tara]

I was recently diagnosed with this condition and wanted to get some feedback. It's essentially what it sounds like- pressure inside the skull increases for no apparent reason. Doctors don't know what causes it, though risk factors include: being overweight (check), taking Vitamin A (check), taking thyroid meds (check), and taking cycline antibiotics (check). If the condition worsens, it can cause vision loss.

Is this a recent thing? Do you have any sense yourself of what might have contributed to it? Does it entail nasty symptoms like headache?
I have no knowledge of this condition. If it were me, I'd consider accepting the MRI to exclude tumour, and trying acetazolamide (IIRC, a carbonic anhydrase inhibitor). I'd be a bit leery of the spinal tap - I guess that depends on the severity of the issue and whether the acetzolamide helps by itself.
I wonder whether the link to correlation with thyroid meds means mainly a correlation with people in very hypothyroid states who are being treated with T4 only, which Peat might consider to be undertreated and needing a little T3. I can't remember your thyroid story.
I'm not up with the details of balancing te fat solubles, but wondering if you are taking extra high doses of vit-A, and whether they are balanced with the others? I think Haidut's done his work on figuring out appropriate ratios.
The carbonic anhydrase inhibitor should raise CO2 levels. There are other ways to do this too - I think you may have experimented a bit already? I'd consider dry CO2 bath if the logistics are doable. If you search for acetazolamide on this forum I think you'll find one or two reports (possibly @Blossom was amongst them?)
If it were me, I'd also consider measuring UpH a few times with pH strips to check if running too acid or too alkaline, ~6.3-6.7 would be nice. If averaging far above or below that, it might give more potentially useful clues. )

Do people wear their blue light blocking glasses during the day? I work at a computer all day so it might be useful to wear them during the day too, but will it mess up my circadian rhythm to wear them during the day? Is it a problem to put them on for a bit while I'm at my computer, then take them off while I walk around?

I don't but I'm thinking of getting some, and might well do what your proposing - wear while staring at screen, take of when I walk away from it.

Out of personal curiosity, if you want to tell, on what basis was it diagnosed?

 

[Katty]

Thanks for your reply, Tara. Yeah, I could have overdone Vit A. Of course I try to balance everything, but I never really made much progress so I was never able to tell if things were balancing correctly. I've been on NDT as well as a combo of synthetic T3 and T4. However, it's been more than a year since I took any. Could have been the doxycycline I took for a staph infection.
I was originally diagnosed with this because my optic nerve was swollen, which is often checked at a routine eye exam. My vision has been a little blurry, which is what prompted me to go get things checked- I sort of thought that my prescription had just changed (which it did, but that wasn't really the problem). Some people have headaches and total vision loss so I'm definitely lucky so far.

I was planning on doing what you suggested- asking the Dr if the spinal tap is necessary. I put potassium bicarb in my foot bath, but it's probably not enough bicarb to make a difference. I've been thinking of doing a CO2 bath as well, but I can't afford the one that's for sale right now and the logistics of making my own sounds like a pain.

Once someone is taking acetazolamide, can I still do CO2 baths? Or are you not supposed to take CO2 when on it?

 

[Blossom]

Once someone is taking acetazolamide, can I still do CO2 baths? Or are you not supposed to take CO2 when on it?

I am not familiar with your condition Katty but my kidneys would start hurting if I used sodium bicarb or did bag breathing while I was taking acetazolamide.
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[Katty]

OK, thanks Blossom. Can I still take potassium as usual while on acetazolamide?

 

[Blossom]

OK, thanks Blossom. Can I still take potassium as usual while on acetazolamide?

I personally wouldn't use anything in bicarbonate form but it seems important to get enough electrolytes while on diamox due to it's diuretic properties.