The Vestibular Migraine & Secondary Hydrops Community
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All the things/drugs/supplements/protocols I've tried


#13

Good luck. It’s very good you have a plan. Being informed and having some sense of controlling your fate is important for mental health.


#14

Have you tried activated forms of vitamin folate (B9)? Like folinic acid, or methylfolate? For some people it can mean literally everything for their health problems, so thought I’d suggest at least trying it for a few weeks. My mom got lots of relief from her Fibromyalgia by using methylated B12 and methylfolate. If you try methyl-activated stuff, start with a low dose first because it can cause some anxiety if you aren’t used to it. That’s why I started with folinic acid first.

I use MegaFolinic 0.8mg, 2x per day. It helps a lot with my body anxiety, sleep, skin issues, and perhaps some of my dizziness / headpressure. I’ve heard its important to have B6 and B12 at the same time, so make sure you have a good B multi-vitamin. I like JigSaw Activated B w/SRT because its low in B3 which can make me a little amp’ed up.


#15

I’ve tried a B complex for years and years and that didn’t seem to do anything and it had folic acid in it and my main problem is dizziness and fatigue so not sure it’s worth spending the money on but thanks!


#16

Folic Acid is not the same thing. Some people are unable to convert Folic Acid to a bioavailable form because they lack a specific enzyme. Hence why you need Folinic Acid (not Folic) or Methylfolate.

I totally get it though, its just another vitamin and probably won’t fix everything. But… for some people out there it is the “one thing” that solves most of their health problems. So thought I’d at least bring it up.


#17

Thanks! It was only ten bucks for a different brands folinic (as they didn’t have the brand you mentioned) so I’ll try it after I try the cbd :slight_smile:


#18

If you guys can recommend any products not currently on the mvertigo shop but think should be there, I’d be most grateful!

Proviso is, for now, they need to be on Amazon :slight_smile: Some products are chosen as they are available in more than one territory, so may not be the most popular ‘brand’ in a single territory …


#19

Hello
Im currently trialing Botox. Just had 2nd treatment today 31 injections. I see its something you are planning to give a go in the future. I will keep you updated and let you know if it gives me any benefit from the dizziness. As yet it has massively improved my pain side of Mav but i still suffer daily dizziness…fingers crossed it will eventually have some impact on this as well
Jo x


#20

Thanks!!


#21

Around how long were you and your mom taking methylfolate before you noticed improvement? I’m starting with .4mg and going from there.


#22

I noticed within a day or two feeling more peaceful, my skin condition cleared up a lot and my myofascial pain was less active. My mom noticed a lot of pain reduction within a week. 0.4mg seems safe to start, then go up a bit from there. I think my mom is up near 5mg per day now. I find that dosing throughout the day is better than one large dose per day. And take a B-complex with it.


#23

I tried .4mg and it shot my dizziness way up and I already take a b2 (400mg) and b12 (1.5kmg) so I had some source of life (has all the b vitamins) so maybe I’ll have to break one of the little .4mg pills in half next time


#24

Shoot, that’s a bummer, sorry that it made it worse. I just tried approx the same dose as you on methylfolate and also got a bit more dizzy/nauseous. Interesting that this little B vitamin has such an effect on some people. I think i’m going to stick with Folinic Acid as it seems to be gentler on my system. Methylation is weird stuff, I don’t understand it, seems like a big fad now on the internet blogs but I can’t deny that it effects me and my mom. Was thinking to go see a doctor that specializes in it.


#25

Dang I misread your message and thought they were the same thing but I think I asked the store if they had folinic and they didn’t even know what it was and then when I said methylfolate they knew what that was so I guess I can see if there’s any folinic for cheap as why not


#26

Tried folinic and I tolerate it better so i’m going to try that along with the cbd i’m trying thanks!


#27

Nice, good to hear, I also use CBD at night sometimes and it helps.


#28

Saw there’s another forum called VEDA but they charge to join and they have a personals thing where you can reach out to other people I guess in your area or around your age but I doubt there’s people on that that aren’t on here or the facebook vm group


#29

Minimum membership of $60 a year?! Their forum must be packed :wink: Maybe I should introduce the same? :thinking:

Could easily create a Topic on here for any major city or area and ask people to respond if they would like to join a meetup. Could create a special category for that. Interested to organise one for your area?


#30

I think I posted a while back seeing if anyone was in the Bay and one person replied who’s quite far in San Jose.

I asked veda and they said paying $20 is fine and it seems if you enter 0$ as a donation then it says “10$ minumum” so if someone wants to pay 10$ to veda and see if it’s worth it let us know!


#31

I had a local meet up with a member here (@ander454). It was awesome, like meeting a member of your own species for the first time. Plus, he’s a really great guy with this wonderful cherub of a 3 year old son. I really appreciated the experience.


#32

Great to hear!!