My neuro gave it the OK, 100mgs or below only (150mg above was bad for kidney or liver, can’t remember).
That’s good to know!! xx
Yeah I don’t add or take anything (even Benadryl) without asking my neuros first. They may have a recommendation or tip (like the 3mo rule) that I couldn’t get from my local pharmacist. It’s a pain but I figure it’s worth asking two highly-qualified nyu neurologists over playing Russian roulette with my body.
Also – check all supplements for msg — your worst nightmare could be hiding in plane sight
Hi! Thank you so much, that’s a great point about the MSG in supplements sometimes. “Natural Flavors” seem to be the MSG culprit often! xx
How are you?
I got the KAL mg glycinate today. I wanted to ask if you ‘think’ that the mg is helping you more or the CoQ10. Any idea? Can you tell? Wondering if the mg is worth a shot without the CoQ10.
hey Asli! I’m doing alright as long as I avoid dairy and caffeine…more than anything else my cuppa coffee is doing me in. I take the magnesium and coQ10 together in the morning and have divided them so I am sorry but I don’t know! I will let you know when/if I stop taking one or the other. I’ve been too focused on staying alright to risk cutting one. That said, I also take at least 200 (often 400mg) per day of B2, so that is something I take as well. Dr. Weil recommends on his site to start taking one thing and then to add-on so you know what is helping but I just started doing it all together. I am not taking gabapentin but I am taking claritin. I live in a very high allergy place so not sure whether the sneezing was allergies or a weird MAV symptom. Claritin does seem to help. I read that CoQ10 can cause some insomnia if yo take it too close to bed so I’d recommend taking it in the morning if at all. I’d like to start just taking Mag and B2 to see if I can quit the CoQ10. I’ll let you know if/when I start taking fewer things and if that is also OK. The Magnesium glycinate is great though. Relaxes me overall in addition to helping with the MAV. Fyi, relating to a prior question, CoQ10 may be the culprit in the GI issues but again I have no idea. In terms of the internet side effect listings, mag glycinate is not supposed to do anything nor is B2 listed as a culprit typically for that, but CoQ10 in high enough doses may cause intestinal discomfort. Sorry I don’t know which one yet! xx
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PS Exercising for an hour daily in the gym helps the most with sleep so if you’re having trouble sleeping try to get some exercise in. When I don’t do it, I can’t sleep through the night. The elliptical is great for MAV because it’s a motion that doesn’t make me feel dizzier…swimming has been good too. xx
Thanks so much. @primer has been saying the same about exercise. That I needed to do cardio. I really think I need to push myself.
Really happy coffee is your biggest problem. I wish it were mine, too! You’re so blessed, just go decaf. It’s not worth it.
On another note, I need to add something to the Nort. Tried Zoloft at a very very small dose the last two weeks as in 5-8 mg tiny pieces and it did me in. So now I’m considering GABA. I know you’ve said Gaba relaxes you. But would you say that it relaxes your muscles, specifically? My neck is in a state of tension and spasm so I’m looking for something that’d help with that.
yessssss. exercise!!! and this is coming from the most anti-gym person in the world.
You can do it!!! @liv85 how do you get on the elliptical? Color me impressed.
My neuro just added Verapamil to my mix. So far it’s pretty good. But won’t know for a few weeks if it’s really pushing the needle. We also added Feverfew supplements (he said COQ10 didn’t really do much to help migraine but that Feverfew was a big time game-changer and told me to take it immediately if not sooner). Melatonin, too.
Neurootologist also increased Baclofen to 15mgs 3x a day (it’s a muscle relaxer that doesn’t mess with your vestibular system) - that really helps with the dizziness, particularly on the subway & in restaurants - it’s not sedating but it just makes those spaces less… jarring. Granted my one experience on the subway since-Baclofen increase was today, mid-day and I had a seat but I didn’t need a stranger to carry me off the train (I don’t know how to describe how horrible subways really are but the nypd had to escort me out of grand central last friday). But @Fussyfussy I recommend looking into Baclofen. It’s kind of a magic maker.
@primer - I find you hilarious! I don’t know how you find the strength to keep your sense of humor with this
Yes, I have been thinking of a muscle relaxer for a while but I read that you can get addicted, etc… What did your dr say, Primer? How long do the effects last? Do you know why it helps with the dizziness? Also, I read that another muscle relaxer called Soma is also a good one. Did he tell you why he chose the B. for you?
I did take feverfew for a few months over a year ago. It slightly messed with my menst. cycle, I thought. Maybe I’ll go back to it.
BTW, I think I am the most anti-gym person! I beat you!
I’m really sorry you need to be carried off the train
I wouldn’t call Baclofen that kind of muscle relaxer. It’s definitely not a fun kind. Really you don’t even realize that you’ve taken anything at all (ie: I took the train into Manhattan, had a client walk-through, then took the train back to Brooklyn and went to the local market to buy gobs of turmeric… had no idea it was in my system). But somehow, by the magic that is Baclofen, you can do things that otherwise seemed un-doable, like riding the subway or going to the local market to pick up electrolyte-filled water or the nth-bag of chicken breasts. It’s intended for patients with cerebral palsy, dystonia and paraplegia but somehow Baclofen helps settle things down for us dizzy kids. It’s not like valium, klonopin or any of the fun -iums that leave you feeling like a goober with a lolly in hand. Talk to your neuro about it.
I’m not a big computer researcher but they like it at NYU because it doesn’t mess with your vestibular system (like valium, which I really do love and secretly wish was prescribed to me because it is the magical unicorn emoji of pills) so you can go to vestibular therapy and actually make progress (I failed btw - the migraine got too big, nasty & powerful! they’re discharging me tomorrow… womp womp… will start up again in June when hopefully the migraine has settled down a bit and I can actually make progress). As a patient, I can scarcely tell when Baclofen is in my system. Last night a little bit maybe but I might’ve been stoned (medicinal! for migraine!). Can’t remember (topamax!). It’s a very light and airy experience, and I highly recommend testing it out. Dr Cho uses it on her dizzy kids and I trust Dr Cho because she’s pretty much Yoda but in cool tops.
Interesting about Feverfew - my neuro was right excited about me getting on the feverfew train. I’ve just hopped off birth control (despite cramps up the wazoo - I’d rather have cramps than these effing migraines) and will be very interested to see how Feverfew mixes things up! Am I having an irresponsible personal adult life…? or is it the feverfew? du-du-dummmmm…
Also - until November, I hadn’t been to a gym since high school - almost twenty years… so what does that make me?
Thanks for the answers.
I think you should not be upset about the VRT. I’ve only heard that Dr. S, and (from you) that NYU uses VRT on MAV pts. Everyone else that Ive heard of say the migraine has to settle first.
I’ll ask about the Baclofen, hope I can tolerate it.
I think I’ll start regular PT for my neck in a few weeks.
Yes, you are the winner of the anti-gym contest… Gee, HS?
I hope you feel better!
hey guys! I’m doing okay on my mixture of supplements. I just like that they are ‘natural’ but I’d like to minimize the amount of supplements I have to take if I can just figure out which ones are helpful more.
The mag glycinate seems to help relax the neck, Asli, so start on that perhaps! I don’t think gaba helped that much with my muscle tension, the only thing that really does is not eating inflammatory foods for me and trying to exercise and stretch. Gabapentin at the low dose I was on did help with anxiety but it also made me a bit spacey. But it’s great for anxiety.
CoQ10 definitely is energizing, but perhaps too much so (in the sense that I am not sleeping through the whole night sometimes). I also can’t decide whether it’s the CoQ10 or the B2 that is messing with my digestion. I prob should cut one tomorrow and see if that helps. But overall the CoQ10 and mag are doing wonders for me. I agree, Asli, that it’s a small price to pay to cut coffee, but the claritin was making me sleepy so it’s just a catch-22. I may stop taking claritin and stop drinking coffee! ha Probably same benefit in the end. Thanks so much for the mention of Feverfew, Primer! Much appreciated. I’ll give that a go too. Exercise is definitely helpful for mood etc. and pushing yourself gives you confidence bit by bit that you can do more than you think.
That was why getting back horseback riding was so essential for me. I can tell day to day how I’m doing in terms of my migraine state (although you have to factor in weather as a variable you can’t control). We’ve got to stay positive about this MAV stuff. Prayer has helped a lot.
Sooner or later we will all recover once we find what is necessary for us to keep the migraine under control, whether it’s medicine, change of lifestyle, or supplements. For me, I want to stay in my job if I can, so I am glad that the supplements seem to be working for me. Avoidance of dairy and high tyramine foods helps me a lot aside from everything else… Feel better! xoxo
@Fussyfussy have some answers for you from NYU (they’re so amazing)
apparently the head of NYU’s vestibular therapy dept (and one of the founders of vestibular therapy) has been monitoring my case. In the past, they’ve found expedited success with combination of meds & VT - somehow my migraine has become extra super nasty and so they decided it’s best to pull the plug until the migraine is settled, most likely around June when the weather is calmer. I think my vestibular therapist is more upset than I am - she feels like she’s failed me. I’m starting up with their vestibular psychologist soon and cannot wait. So that’s why NYU does vestibular therapy on patients mid-migraine cycle (I also learned that they have bunnies on staff and am gutted I haven’t met any).
quizzed vestibular therapist about Baclofen. She said it’s similar to Valium but without the fun side-effects (I told her that wasn’t cool, tbh). From what I gathered (memory is foggy), it suppresses the vestibular system so that it doesn’t go all wonky like ours like to do. Where baclofen differs from Valium is that it relaxes by working as a skeletal muscle relaxer. It also has a super short shelf life (1-4hrs) so it’s out of your system in a hot second. I’m very influenced by fun pills (i.e.: the -iums) and feel absolutely zero difference on Baclofen. So if Valium is the unicorn emoji of pills, baclofen would be the standard poodle: stable, awesome and smart (and also kinda cute).
Final thing: vestibular therapist had a conniption when I told her I stopped watching the optokinetic video. She said that would help with trains, transportation, grocery stores, etc more than anything else (even pills! ) . So try to watch it daily if you can.
Thank you, @primer!
That place sounds amazing.
Tbh, I can watch that video from beginning till end and it won’t affect me a bit. I did it at first try, no problem.
But come the darn fluorescent lights at the stores or work and my brain is cooked.
I hope you feel better soon. My headache is hideous right now :(.
Eeuugghh! I just googled optokinetic video and wish I didn’t! I can’t look at that! So how does that help? I’m intrigued as even when I feel good otherwise, it’s the visual weirdness that still gets me to some extent. If it will help with that I’ll give it a go. Could it make it worse?
Primer, I have to say I’m in awe of you! The severity of this for you is horrendous but your attitude is amazing. I can’t even imagine- I’d be a housebound wreck. You are making me think twice when I start to feel sorry for myself! Seriously in awe!
Hey guys! Yeah I agree that Primer, you have a fantastic attitude!!! You’re going to slay MAV. It’s a lot about the attitude I find and also determination to push yourself. I went riding this morning without meds and just on magnesium (I need 800 mg per day I have found to keep the migraines at bay). Probably need to add in a calcium in the middle of the day to balance it out. B2 is something I’m taking again today but not CoQ10 as I think it as messing w/ my digestion and I want to find out how much it was actually doing. I am drinking a latte right now to see what happens on my non-work day, I suspect it’ll cause me to get a migraine so I want to see! I love coffee, dairy and chocolate the most of all things and it would be highly ironic if those are actually my primary MAV triggers…which I think they are, along with MSG. Hope you guys have a good holiday weekend! xx
Liv - I am going to sound like your mother (with which there is nothing wrong, by the way, moms are great, that’s what I keep telling my two teenager boys…lol…), but, I am afraid you are testing the limits too much! Latte? Dairy? Chocolate? At least space them out by a few days .
On another note, I am on day 2 of 400 mg mg gly (KAL brand) and am just as miserable .
Hmm. I wonder why the mag isn’t working for you yet. Have you made sure you’re taking it without any other calcium at the same time? I think avoiding dairy or other fortified things when you take it might help? I started the b2 and coq10 at the same time too so maybe that was helpful. Gosh I really want you to feel better. Have you tried cutting out gluten and/or dairy? Also see if certain fruits trigger migraines for you. I sometimes suspect that pineapple and/or melon trigger them for me. I really need to stop pushing my limits. I agree! I just want to be able to go back to the old ways but I can’t. I probably should try a raw food diet or something and really get healthy. Very great that you have two boys!!! xx
Guys! Do the optokinetic video!! It’s all about habituation. I was at 11-seconds yesterday and got up to 18-seconds today!! Watch it on your phone, not your laptop. Also, sometimes I cheat and watch it sans contacts or coke-bottle glasses (I have wildly bad vision) and it’s far easier to do when you’re near-sided. So if you are near-sided, watch it on your phone, without glasses or contacts. It gets easier every day - just don’t let it overwhelm you. Watch it as long as you can muster, then throw your phone across the room, close your eyes and turn out all the lights and wait until you return to your baseline. Then return to it the next day. Somehow the video helps train your eyes to deal with really jarring stuff like watching TV, riding the subway (my biggest hurdle) and other really motion sensitive things.
And seriously Liv - DON’T PUSH YOURSELF. I did the exact same thing as you last year. I got off all my meds and thought vestibular therapy could cure my migraines (well, I had no idea I had migraines, I just thought I was dizzy and was like, anticonvulsants are you effing kidding me?? that’s cray) and now I have total strangers carrying me off the subway. So let me serve as a cautionary tale. I understand how liberating feeling normal is but stick to your routines, meds and migraine diets: we still don’t have cures for migraines - we just have lifestyle adjustments, medications and supplements. I would hate for you to trigger a migraine cycle like what I have. Some of us in this group are really, truly disabled - you don’t want to risk finding yourself in that place. Take baby steps and outline a month-by-month plan with your neurologist (I love outlining plans with my neurologist - we make lists together). Our brains are very sensitive… just don’t provoke anything too soon.
As for attitude, yeah! Positivity is my beat. My family doesn’t live here and I live alone… so positivity is all I have! I figure I’m going to get better a lot faster if I stay positive and goal-oriented. Migraines are deeply embedded in anxiety & depression; and, if we let that get the best of us, the migraine wins - so why not get ahead of the migraine and do everything to stay up-beat? Go to therapy, work out, face your emotions, cry when necessary… but most of all, don’t feel like a victim. The dizziness is just a migraine. If I can talk it down then it’s not as big of a scary monster any more. If that makes sense. Pot also helps.
@Fussyfussy - check the ingredients of your supplements to make sure they don’t have hidden triggers like msg in them. You unknowingly could be hurting yourself. Also supplements take a long effing time to actually work (my neuro said up to three months). We’re all so desperate for instant results that we hope for an overnight effect but it can take time. If you want instant effects, drink more water (I like super cold Smart Water because it has electrolytes - I keep it super cold because that has a wake up! effect). Also… ride your recument bike for 15-20min ( ). I almost always ride on super duper migraine days because the endorphins help curb pain. The other thing that helps with super migraine days is Imitrex (took one last night, probably have a date with one tonight). I wish I had a magic wand answer but really what works for me is riding the bike, taking a hot shower and eventually crawling into bed with an imitrex. Which is typically how my day unfolds.
…and you thought I was going to get through a post without recommending riding the bike, didn’t you?