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Guidance –Swaying - do not know what to do

Hey there,

I’ll list the stuff that helped right away (but I took it all in combination so I don’t really know if one is expendable):

200mg of magnesium 2x a day (doctors best brand) - otherwise I have to take 400mg of magnesium glycinate (KAL brand) 2x a day for the same effect (it may not be as absorbable)
200 CoQ10 (blue bonnet)
claritin
400mg B2 in the morning
St Johns Wort supplement pill (GAIA brand) 1 pill 3x a day

This all seems to help a lot. However, sometimes when I have too much dairy (milk may be a trigger for me) I still have symptoms…wet/rainy weather also affects me (i.e. low barometric pressure).

Hormones seem to make me feel worse too…when I’m about to get my period for instance I am more prone to have symptoms I think.

Try the CoQ10 and the magnesium brands I recommended and throw in a claritin and some St Johns Wort and see if that all helps!!!

Liv xx

Gabapentin btw was the only med that helped somewhat - definitely reduces anxiety while you’re trying out supplements - but it does make me kind of out of it. The other meds caused too many sx for me.

PS It’s not anxiety. I had the same thing told to me when I saw some doctors at the beginning. Gabapentin helped- other drugs can help too (nortriptyline - I was helped at 10mg after about a week on it) - topamax helps others but is slower acting. Search for these drugs on this forum. Basically all the drugs had too many sx for me - so I am on supplements to manage the MAV. Its soo much better basically I’m living life again normally almost - except I get more tired than I used to and have to keep things in balance. But overall I am sort of grateful for what happened since I eat meat again and am more attentive to my overal health (I take Vitamin D, etc now for immunity). The cause of the MAV symptoms (all of which I had identical to yours) is a viral attack on your nerves. That’s my theory and the theory of a neurologist who researches viral attacks that cause neurological symptoms. It’s not well understood so people call it a migraine. It’s basically neuralgia - like shingles but in the cranial nerves. It won’t strike twice usually if you get stronger in your immune system and lower your stress. St Johns Wort helps to to put back in place the immune function to stop the attack again - that’s what this neurologist told me. Basically depressed and streseed people are more immune susceptible to getting this type of viral attack and then the subsequent after effects that are MAV. I still have a bit of left eye pressure and left ear crackling sometimes…and some light sensitivity but overall NOTHING in comparison to what originally was there now that I"m on this supplement combo. I eat well now and try to exercise regularly… the elliptical is my favorite as are swimming and horseback riding. I’m still anxious from the problem but overall just grateful to be mostly better!!! xx

Hi Liv
The GI issues is most likely due to large amounts of magnesium. When your levels are saturated, it can happen. As with all supplements - they are not created equal. Really good brands are pharmaceutical-grade and put together with exceptional raw materials - and designed with absorption in mind (some companies put synthetic or unusable sources in their products just to make the ingredients comparable). Finally, with CoQ10, many claim the pricey ubiquinol is best, but don’t spend the extra money on it - it oxidizes in your intestines, and is transformed to ubiquinone and absorbed as ubiqinone. I read this interesting article about Coq10 and absorption and my family saves a lot of money on ubiquinone (http://www.q10facts.com/q10-as-ubiquinone-or-as-ubiquinol).

Thanks so much for the feedback!!! That’s really helpful to know about CoQ10 since it’s so expensive. I’ve been having some insomnia lately due to something…I don’t know if it’s the SJW (which I really need to take since it helps so much with the eye pressure/pain) or the CoQ10 since that’s also listed as a side effect sometimes. I may experiment with melatonin a little at bedtime to see if that helps sleep last through the night… gabapentin always puts me out like a light though so I could do that perhaps again at bedtime if need be. I don’t like to feel too zombie-ish during the day though from gaba.

Are you on a bunch of supplements or following a diet (or taking meds) right now, Organically Healthy? How are you controlling your MAV?? I would be very appreciative for your advice. xx

Hi Liv
Try to take your ubiquinone earlier in the day. It gives you and your body energy, so you can figure the effects if you take them late in the day. My nutritionist says CoQ10 takes approx 6 hours to kick in, if that helps at all to avoid insomnia (take 100mg at a time several times/day is better than taking large doses at once - you can’t absorb too much at a time - again, save your money). Magnesium is incredible and it has been very helpful to me and many in my family and circles. My aunt has MAV, that’s how I have become interested in researching natural ways to combat it – and I love your list and it will be put to the test. She is a little stubborn, so it will take some convincing to get her to try new things, but your success story might really help matters.

Hey there Organicallyhealthy, It’s really awesome that you are helping your aunt. This is is a heck of an illness! I am so happy that the combo seems to work for me. Butterbur is also helpful (Petadolex) if she wants to try that. I don’t think it’s as assuredly safe as SJW and the others but the butterbur without the harmful stuff in it are marketed by the German brand Petadolex. Whenever I eat a lot of high tyramine foods or drinks I also suffer more. Yogurt included. Liv xx

I’ll echo liv’s recommendation of those supplements. My neurotologist told me to take 50mg B-complex and 200mg CoQ-10 once a day, and 500mg magnesium twice a day, as well as having a little bit of melatonin before bed (he recommended 2mg but I’d already been taking 5mg). I still am far from “cured” and will feel “weird” or woozy sometimes, but I don’t think I’ve had too many (if any) of my more acute lightheaded spells.

I’m also trying to keep the sodium level down, avoid dairy, and keep my posture (especially my neck position) straighter. So it’s hard to separate everything out, but I do think that the magnesium especially is helpful.

Thanks so much for the advice, Miggyko!! I need to stick with the CoQ10 as part of my routine and keep the magnesium high enough to have the effect it did at 400mg 2x a day (I was using KAL magnesium glycinate brand). The CoQ10 I was using was causing some GI issues, but I shouldn’t have stopped it. It helps a lot. I’m not taking B2 right now- I think that the two most important parts are the CoQ10 and magnesium at a high enough dose. Gabapentin is also helpful but I don’t want to be taking meds if I can help it. I’m just really eager to find a routine that works that I could take during pregnancy. I think CoQ10 and magnesium are safe. Let me know how you’re getting on! Are you having a lot of woozy spells? Do you think Dairy is the trigger or gluten perhaps? I sometimes wonder if eggs are a bit of a trigger for me… Hard to know.

Hi Liv,

I suspect the vitamin B is the least effective of the three as well. I hope you find something that works for you during pregnancy – I’m thankful that I don’t have to worry about that extra layer of complication. It’s tough enough as it is. Since starting these supplements, I have had only a small number of dizzy “blips” as I like to think of them. I have still had days when I was more out of it or generally lightheaded, but very few acute sensations. I don’t think gluten or eggs are triggers for me. Dairy might be a trigger, but I think that’s more of a GI issue for me. I really think my posture, particularly how I hold my neck, is a huge factor. I’m sure it’s not for everyone, but it definitely is for me. Even craning my neck to look down at a document on my desk for 10 minutes can cause me to feel really crappy! Keep up the search and good luck finding something that will work during pregnancy!

Sorry to revive an old thread. But did you get a diagnosis from your neurologist?