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


#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!!


#33

Haha, yeah, sorry @flutters the meeting might have caused a flare up for you with the traffic rushing by. It was very nice to meet you and hear your story in person, I was blown away with what you’ve been dealing with, a real inspiration to me. :heart_eyes:


#34

Hey Erik, that’s not on you. I think the flare up was a tense meeting at 8 am in one city followed by 4 hearings in another, then the nasty traffic getting home from Bellevue. Too much in one day. It was just wonderful meeting you and your son. Totally worth two days of mini-relapse, which I’m certain I could have pulled off with just the work stuff that day. Meclizine handled the traffic in the moment. I just overdid it that day. I expect I’ll do the same again in Long Beach next month when I scheduled a three hour drive followed by 5 hearings (at least one is contentious and will be ugly to manage) followed by another 3-4 hour drive home through the Nisqually mess. I love my job, but some days I get spread too thin. Chelan next month, too. Hoping the smoke is cleared. If not, I got myself a new mask with flowers all over it. My son called me ‘hippy girl Bane’. So totally glad for the rain cleaning the air today and cooling it off. This summer has been brutal.