Thanks so much, Asli!! I was on such a low dose I could quit cold turkey! (100mg three times a day). The ONLY problem with my natural supplement regimen that is working so well is the (ahem) laxative effect of either CoQ10 at 400mg or the magnesium (although this type is supposed to be not as bad). OMG. I am cutting out CoQ10 tomorrow to see if the magnesium is helping me more and to find out which one is the culprit. This saga never endsā¦ xx
Awesome! Well, the likely culprit is the magnesium since it is a laxative, but youāll find out.
Liv, I remember you saying that you had MAV and didnāt treat it with meds for a couple of years. Do you think the gaba took you to a better place as a baseline? I know the supps are helping you thatās what you believe that is keeping you well (which is great); however, would you think that if you had never taken gaba, you would be doing as well with the supps alone or the gaba did improve you with lasting effects?
Thanks, dear!
Hey there! The magnesium is working on its own better than gaba or any of the other medicines ever did, and I guess itās less toxic (safe for pregnancy) but on the other hand, itās super crazy with the digestion. Iām just hoping that it was the CoQ10 that was doing that, and maybe that will go away if I cut that one out! Hard to tell which.
The gaba has a very short half life and I donāt think it brought me down to a baseline because the day I went off of it without magnesium once, I was super dizzy and off balance. So I think itās the magnesium, CoQ10 combo. Or just the magnesium. I took 800mg total of mag glycinate today and seem to be doing well xx
Hey Liv -
sounds good. Best wishes with the 800 mg :).
Could you post for us the brand of mag. gly. you are using to make sure we try the same.
Thanks!
Hi Asli!
Sure! Happy to be of help! The brands I got were at Whole Foods but they might be harder to find at other stores. The are KAL brand mag glycinate and and the 365Everday (Whole foods brand) of CoQ10 (400mg of that plus vitamin E). I am not taking the CoQ10 today to see which of them was actually helping more and which was causing the laxative issues. I think at high doses CoQ10 can also do that, so I might try lowering my dose if thatās the one that was the issue. Glycinate is not supposed to have the laxative effect, so hopefully thatās not the one.
Try them out! Iāve been doing better than Iāve been doing in three years just on them. I even had 2 beers last night when I went out and was OK. Iām never totally 100% the way I was before MAV hit, but I will be OK like this I think.
Liv xx
Hi liv,
What are your symptoms and what medication have you tried? How long have you had MAV for?
X
Hey there!
I had exactly the same onset as you - thatās how I felt exactly. I think itās a viral attack that damages the nerves and makes them overly sensitive. Thatās the cause of MAV in my view, but I donāt have medical proof aside from journals that cite Ramsay-Hunt without the rash as causing neurological symptoms - particularly in young people who donāt present with a rash and therefore donāt get proper diagnosis and/or quick anti-viral treatment. My doctor thought I just had simple vestibular neuritis but more nerves were affected than my inner ear nerves/balance nerves - my ocular nerves became highly sensitive (hence the light sensitivity) and the cochlear nerves cause the clicking, and the vestibular nerve is aggravated by stimuli - it seems like they are all connected in the brainstem. So that when one nerve is aggravated by a stimuli the other ones get in the action to.
Good news though, which I wish I had known a long time ago (this started in April 2013), 400mg of magnesium glycinate is still working wonders (I donāt know how it calms the nerves down, but it DOES). 300-400 mg of CoQ10 also is something Iām taking, and that could also be helping calm the nerves. My job requires me to be under intense fluorescent lights for long periods of time, so I am so grateful this is working. I do get anxiety still that I will get really off balance but I should just put it out of my mind since this natural route is working better than nortriptyline or gabapentin ever did for me - I also tried topamax but had very adverse reactions to that psychologically. Iām just highly med sensitive though, so if you want to go the medicine route, go ahead - I just think ironically the supplements are much more effective in suppressing my MAV even after Iāve tried the meds.
I may experiment with 400mg of mag glycinate (I take the KAL brand) 2 times a day to see if that helps even more. I succumbed to coffee today because Iām jet lagged (flying was fine with the magnesium too!) and that mainly exacerbates my anxiety levels, which is bad for the MAV, since I act like a spaz, but that and MSG are really the only things that seem to increase my head pressure. I donāt know about the other foods. I just canāt figure that out. But I recommend these supplements.
Youāre lucky to have kids - I think I read youāre a stay at home mom? I wish I could control my environment - I unfortunately have to go to the office and archives a lot so Iām just grateful that these supplements are helping me feel a lot better. I still get some symptoms (head pulling a little bit, some ear crackling and some eye pressure), but nothing like before. Good luck and try the supplements before the medicines if you can! They are much easier on the body, I think. But watch out for non-glycinate magnesium, as it does have a laxative effect.
Liv xx
Thanks, Liv.
Iāll wait to hear your next update regarding your current experiment with the Mg (hope it continues to go so well!) before I make the decision to buy.
I checked out Amazon and found quite a few options, including the KAL (probably cheaper than at WF, too - you might want to check it out).
Best
Just jumping in, I have also felt some improvements once I started Magnesium glycinate and B vit. I might switch up the latter, I got a B complex, but is it B2 that people like?
I am also finding the Migraine diet very useful. I have cut out loads of triggers and am making progress there too. I found these two books at my local library (have not read cover to cover, but enough to pick out doable changes):
Heal Your Headache by Dr. David Buchholz
and
The Migraine Brain by Dr. Carolyn Bernstein
Wishing you all a speedy improvement to your symptoms!
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hi Christine,
yes, those are the most recommended two books on Migraine.
people take B2 for migraines. I used to take a Vit B complex from Whole Foods (not for migrines, didnāt have them then) and ended up with B6 toxicity which started the whole downturn in my health, culminating in the MAV at the moment.
Hi Christine, yes I think itās b2 that is recommended at 400mg per day? I felt better those days I was doing it with the mag and coq10. But I wasnāt sure which think was causing my stomach to get upset. Maybe Iāll throw back in b2. My nuero prescribed me gabapentin after several other drugs and it also helped at 100mg 3x a day. I may go back on it for the nicely calming mood qualities if nothing elseā¦as you know this condition creates a lot of anxiety that I still feel even when Iām doing better because I am so always waiting for symptoms to get worse (even when they might not!) itās also just the memory of feeling so badly for three yrs. on a positive note though, Iām much healthier overall since Iām do attentive to my health nowā¦Iām sure you all are too in a similar way. Xx
Hi Liv,
I know you once said you felt better after the first the first dose of Gaba. Does it mean, you didnāt feel ups and downs (all else constant - meaning not overtly being triggered by something you know about) after that until the meds evened out?
Also, Gaba doesnāt depress you? Isnāt it a CNS downer?
Thanks.
Hey Asli, yes I can feel ups and downs no matter what. Lights and caffeine are the main triggers. gaba and magnesium both help a lot- magnesium even more so for me in terms of lights etc Gaba just makes me a little sleepy but not depressed. just more calm. I kind of miss it! The only side effect at my low dose was a bit if water retention in my lower body but nothing else. I was worried about it for pregnancy but I am not planning to have kids any time soon, so I might go back on it to maximize my feeling of recovery in combo w the other supplements. Gab was the only drug I can tolerate. Xx
http://www.bodykind.com/product/298-High-Absorption-Magnesium-240-x-100mg-Tablets.aspx
I get these ones.
I have found that migraine supplements work better than medications in my case. Have tried botox and all sorts of medications such as TCAās, Anti seizure, abortive. My most recent med, Pristine did give a slight boost in mood but that was all it did help with. Side effects werenāt worth it. Migraines were not reduced. Slight reduction in intensity but not life changing.
I take a migraine supplement that has Magnesium, Butterbur, Feverfew and B2 and it helps a little. Definitely worth the expense IMO.
I am still trying to figure out if my anxiety is caused by migraines or vice versa. The chicken or the egg dilemma. Have had these migraine issues since I was a kid. I now have a therapist telling me that my illness is psychosomatic. I figure it is worth exploring. But I feel my anxiety is caused by migraines and reducing the anxiety will be hard without having a handle on migraines.
Hi. Iāve had MAV on a off now for 7 years. I had it really bad for the first 2 years until I got diagnosed by Dr Surenthiran who put me on Nortriptyline. I eventually got up to 70mgs and was symptom free for years. October 2019 my GP noticed that Nortriptyline was affecting my heart and wanted me to come off it so I went down to 20mgs and stayed there with no MAV issues or heart issues. March 2020 my MAV symptoms returned after covid so I went back up to 40mgs with candesartan too. Now Iām back down to 10mgs Nortriptyline and need to come off it. My dad has young persons dementia and as there is a possible link between Nortriptyline and dementia I canāt continue on it. My symptoms are Back again now. Iām lightheaded and dizzy a lot, derealisation, my vision is off and I canāt focus my eyes properly, I feel like Iām looking through a layer of film and everything seems so bright. so tired and fed up!! What medications have worked well for you? What are my options?
Have any of yous got a opinion on the study between Nortriptyline and dementia? Nortriptyline has worked so well for me Iām gutted Iām coming off it.
Hope your all well x
I think you should split this up between an update on your case and a separate topic on your title question.
When you are updating your case, please do not create a New Topic, but seek out the original Topic where you introduced yourself (Iāve moved your new post there already), or create a #personal-diaries
Please consider the reader and how we need to keep this forum neat and tidy and well organised.
Itās NOT Facebook ( )
Are you expecting people to regurgitate information posted elsewhere and sometimes with great effort like the Big Med Poll and repeat it here?
We donāt want to be turning your topic into a general discussion of the best meds for MAV now do we? It should be specific to your case.
You should discuss this here: Article: Dementia risk tied to these commonly prescribed drugs, study says
Always use search to find the best place to discuss a specific topic.
Thanks Iāll have a look at that dementia link.