Actually i have not. I am currently taking a regular multi vitamin. I had blood work last week to see if I had any deficiencies and the only one I had was vitamin D which doesn't surprise me. Most people don't get enough B12 or vitamin D (according to a nurse I had in the hospital), based on blood results. The nurse told me that their is a very limited time during the year in which we can actually absorb the vitamin D we need from the sun. So I would say it's fine to take a multi vitamin if you are not sure what you have enough off or don't have enough of. You mainly just have to watch out for vitamins that are fat soluble. You can take all the fish oil or flaxseed oil you want (I also take these just to help up my good cholesterol and they are great for the heart).
Hope some of this was helpful.
Hugs!
Mallory :)

I recommend you have blood work done to check your potassium levels, if you don't have that done already. That way you know how much you need to take since you are on Diamox and Diamox leaches potassium (and other vitamins) from our body. I got terrible leg cramps because I wasn't getting enough potassium and some other vitamins.

Interesting, Mal. I just had a CBC done by my PCP, and he called me to tell me to begin taking 5,000 IU of Vitamin D per day. I was like, "Uh... I've been doing that for over a year now!" he couldn't believe that my vitamin D was still so low! Time for me to get my happy light out again, I suppose... Anyone else ever tried that?

No but i got special light bulbs thst sre suppose to mimic sunlight

My vitamin D level use to be 21 according to a CBC last spring. I stopped taking the vitamin D last fall. Last week it showed it was 19. So I guess I will be back on 4,000mg of vitamin D. I had a special test done last fall that showed all of the vitamins that our body needs and what my levels were (I was taking 1,500mg of Diamox at the time). It was very interesting to see that I was low in B2, foialic acid,Vitamin D, border line B12. I was good about getting enough nutrients and vitamins but because of the diamox it just leached them out of my body like I hadn't taken any of those vitamins.
Good for you girls! Go get so light :)

I am boycotting doctors right now lol, ok not really I'm just so tired of going to appointments.
I just knew you weren't suppose to take very much vitamin A because of the PTC. I really would love to go back to the vitamins I was taking before. I don't know what it was about them but this specific brand (www.womentowomen.com) was so easy to take and didn't upset my stomach but I know it has 4000 IU or whatever measurement it is.
My regular doctor doesn't really know I've asked him before so I'll have to wait till january when I see the neuro again, so I figured I'd ask again.
Last time they did my blood work they checked a lot but I don't remember them checking the vitamins. They did sodium, cholestorol, potassium, etc. everything was normal. Except my Cholesterol was low ( I was like seriously you can actually have LOW cholesterol?!)
Thanks everyone for responding.
Danielle

You can have low HDL (good cholesterol) or low LDL (bad cholesterol), obviously it's better have have low bad cholesterol. If you have low HDL then it means you need to be eating more foods rich in good cholesterol (such as fish). I don't like fish so I take fish oil, which gives you some of the benefits of eating fish...it's basically next best thing. I have low LDL, and struggled for a long time to have high enough HDL, but i finally have high enough HDL :)

My HDL is very good, like 110 or something like that, they always comment how good it is since I can't eat fish. It can be raised by exercise and I always point that out to them that yes see I really am working out! It was my LDL that was low, I think it was 60. It just seemed funny to see it actually tagged on a lab value as low, when everyone is always worried about it being high cause I'm overweight. I just tell them further proof I really do eat right and workout.

That's odd. I was told to take Vitamin D a few years ago after a test showed that I had no discernible amount in my body. I wonder if that is related to IIH? I take Potassium, B12, D and Fish Oil daily. It helps me while taking 1500 mg of Diamox. If I don't take them I feel sick all the time, like the life has been leached out of me.

The Vitamin D is interesting..Mine was 12 and so they put me on 50,000 mg because it was so dangerously low. It sounds like a theme....I do think we need to take multivitamins.. Our body needs that extra dose of vitamins and minerals.

T...

Lack of Vitamin D is definitely linked to headaches... Don't know if it's linked to PTC. Maybe we are all descended from aliens & the mother ship is coming back for us soon? ;)

Sometimes you just have to laugh, or you'll just cry....

Lisa

For myself, I wouldn't take any multi with any of the preformed Vitamin A varieties. It is essentially Accutane, which can independently cause IH. Carotenes, on the other hand, do not cause IH, although most researchers think taking carotenes in isolation (without the food from which it came attached to it), either does no good, or does harm.

Too much vitamin D can also cause IH, but I seriously doubt anyone with IH is in danger of overdosing on Vitamin D provided they take a medically acceptable dose.

Since it's likely that all IHers have something that's gone wrong in their utilization of Vitamin A (the evidence being that there's too much free retinol in most IHers CSF) and since researchers believe that Vitamin A will bind to Vitamin D sites, it's probably not a mystery why many IHers are low in Vitamin D and have, or will have, trouble getting their levels of Vitamin D higher.

If what these researchers believe is true, then you'd have to "kick off" the Vitamin A that is wrongly attached to Vitamin D receptors before Vitamin D can attach to their receptors and be stored. That will happen over time if you stop ingesting preformed Vitamin A. But to move the process along, a person would likely have to lose some of their fat first (which will lose some of the Vitamin A along with it), THEN take Vitamin D.

And when I want to get a vitamin in me, I take a sublingual form. That said, know that many brands of Vitamin D also contain some amount of Vitamin A, particularly Vitamin D derived from fish oil (I would never take fish oil with IH, ever). For that reason, I would suggest sublingual Vitamin D from Lanolin. Michael's makes one with Vitamin K2, but it's the K2-MK7 variety, and I prefer a little K2 MK4 most of the time, so I just put a Vitamin D gelcap under my tongue.

I would do the research yourself rather than ask a Doctor. Most are clueless regarding Vitamins, and many never tell their patients to stay away from preformed Vitamin A. But I be if you asked them if you should get on Accutane, they'd get that answer right :-).

Kind regards,
Cottages

Thank you Cottages! So far they tell me all of my levels are normal but I have felt like crap since I quit taking my multi vitamins. I have some calcium with D3 I'll have to see if they have any A in them. I know my mom has always been very deficient in vitamin D but they claim there is a link between low D levels and hypothyroidism.