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Guidance –Swaying - do not know what to do


#9

Thanks for your reply Scottl. Interesting that my doctor has given me an increase of 10mg per week, which is very fast. I’m supposed to get to 50mg/day and be on a maintenance dose. 4-6 weeks? Ok I’ll try to be patient with it then.


#10

I was wondering if any one can help me with this.

One doctor told me Vestibular Neuritis. But I think I have MAV espeically since I have constant swaying + constant pressure in my forehead ( mainly ) , top of my head and lot of pressure at the juncture of nose in between eyes and forehead ( not sure what is this position called ).

Now if i take an an antidepressant like nortriptyline would this work as a vestibular suppresant and prevent any balance compensation my brain is doing ?

@ Scott - Just for my peace of mind. Could you relate to my symptoms and do you really think I have MAV. My first neurologist told me I have anxiety, my ENT told me I “may” have vestibular migraine but he told me “such an acute onset and no history of significant migraine headaches makes it less likely”. I had told him that in the summer of 2014 I had headaches every day in the afternoon for few days and it went away. Even if you do not have a history of migraine can you still have MAV ? or am I having pure vestibular neuritis. I am bit confused on what I really have :slight_smile:


#11

It seems people are given different rates to increase the dose. So follow your doc’s instructions but it takes time for the medication to have a noticeable effect. So it sounds like he wants you to get to 50 as quick as you can then be on a maintenance dose? I was told to increase every 4-6 weeks and stop when I stabalised. Then I’d be on that dose for a year’s maintenance. I hit 35 and seem to be doing ok so I’ll just stay here. Maybe go to 40 just to see if it gets rid of the residual symptoms. So I suppose the difference is I’ve been working out my own dose, but sounds like your doc knows where he wants you to be and just wants you to get there quickly. It took a couple of months to feel any improvement though.


#12

I have most of the symptoms you described. I have particular problems looking into mirrors, or focusing on things up-close in general (so like standing at the urinal and staring at the wall in front of me, I tend to get “blips” of lightheadedness or unsteadiness). On bad days, the floor feels like it’s moving up and down below my feet as I walk.

I am trying to go without caffeine but I haven’t been 100% with that – I had a cup of black tea this morning because I was so zoned out/tired. I went almost a week without any though and I’m gonna try to do that again. Chinese food is definitely bad for me. My neurotologist told me to get the book “Heal Your Headache” (it’s on Amazon), which mostly focuses on stereotypical headache migraine, but attempts to cover all types of migraine including vestibular. The dietary restrictions on there are very daunting though and I can’t bring myself to commit fully. He also had me start taking B complex and magnesium.

Just to comment on the Valium issue – my GP gave me a prescription for that way back when my problems started (it was more acute for me then – hard to even get out of bed), and I’ve found that it works. I took 2mg 3x daily for 3 days, then down to 2x daily for a couple of days, then down to 1x daily for a couple of days. Now I only ever take one when I feel particularly bad (which tends to be on very tired/stressful days). I go through one 60-pill subscription per year, roughly, so maybe one every other week? Not so bad in my opinion. My VM is definitely made worse by anxiety though, and sometimes I take the Valium for that, like before flying.

Last, I’m convinced my VM is also made worse by my bad posture. I had to go to physical therapy for bad posture, which was causing tingling and a slight numbing pain in my left arm for a while. (Went to a cardio first because that scared the sweet Jesus out of me.) I try to sit up straight more, but I still put my neck in bad positions or slouch from time to time, and I think after I do that for a while my “blips” of lightheadedness are worse.


#13

Sorry to hear what you are going through miggyko !

I am meeting Dr Shaun Watson next month. His nurse did all the balance / hearing test and all came fine. I had done already one with my previous neuro who thinks I have anxiety dizziness and send me away !

I saw and ent and he said I have labryinthitis and gave me some steroids. no use. When I suggested to him MAV he said , could be but unlikely as I did not have headache or history of headache. So I am confused if I am Lab or MAV but no matter what I have the constant swaying feeling , heavy heady , pressur on top of my head and frontal nose and buzzinf in my ears. He said try Amirtypyline and put me on a 10 mg one. Just started now. Now I am getting blurry vision also… Not sure if it is a side effect. Not sure if I can try valium with Amirtypyline . Need to ask my GP, but GP’s are generally clueless…


#14

Hey guys,
I posted “my cure” a few days ago - basically I’d encourage you to try some or all of the below supplements. I still haven’t figured out which ones are the most important but in combo, I’m perfectly fine now… I still want to see if I can minimize the supplements so I’ll post if I can reduce them and see if I stay fine. I can work fine though in front of my computer now and under fluorescents. It’s a true blessing.

200-300mg daily of CoQ10 (blue bonnet or Whole Foods brand)
200mg of Doctors Best Hyper-Absorbable Magnesium (chelated) 2x a day - spaced out by 12 hrs
1 Claritin redi-tab daily (NOT claritin D- just the normal claritin)
400mg B2

This also seemed to help me even more: 3 pills of St Johns Wort daily (GAIA brand-which is standardized) but I seem to get a little bloated and have a bit of insomnia when I take it, so I’m not taking it right now and I’m doing fine still but it did seem to cut the final part of the symptoms

I am doing really well though, drinking wine, 1-2 cups of coffee, anything I want to eat, living life again…it’s so strange to have recovered that I don’t even know how to feel about it!!! I hope it lasts:)

GLUTEN seems to be a trigger for more symptoms though, since that’s inflammatory and in foods high in sugars often.

Sorry if this seems complicated, but it’s not…once you get into the routine. The only hard part is swallowing so many pills every day!

Gabapentin helped me with anxiety from MAV…but I don’t need it anymore thankfully.

Liv xx

PS Another good brand of magnesium that helped me was KAL brand of magnesium glycinate, but perhaps not as much as drs best (but I want to see if drs best is causing a bit of GI issues for me…it’s a mystery if that’s the thing or the CoQ10…)

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#15

Thanks Liv. I know what I am going to ask could be different to different folks. But how long did you have to take these supplements to see a difference , especially getting rid of the swaying feelling.

Also could you please descibe your initial symptoms ( if you remember :slight_smile: )

Mine is - constant swaying , rinning in right ear ( mostly ), pressure in head / nose and ears. When rinning s loud swaying also increases.


#16

BY the way I am taking the below for 1 week now. No effect yet

Bitamin B2 200Mg each twice a day
Magmin ( blackmore ) Magnesium Asparat 500 Mg 1 times a day
Vitamin B12 1000 mcg
Vitamin D

Now I am going to add
CoQ10
Gingko Biloba as well…


#17

I Relate a lot to your symptoms. MAV just like similiar diagnosis can’t be proven by lab parameters or MRI Scans or the like. And it (probably) can’t be cured. So, you can only treat the symptoms.

The one thing is to very close attention to your diet. Mind you that the symptoms can occur up to 24 hours later.

Things that are helpful for me are:

  • anti histamine (I use cetirizine)
  • migravent
  • Vitamin C
  • travel gums containing dimenhydrinate

I get along with that pretty well. If that doesn’t help you (enough), then you can try topamax or similiar. Those can have nasty side effects though

(NB from admin: these images link to products members have found helpful and at the same time helps fund the site: As an Amazon Associate I earn from qualifying purchases. More recommended products here. Thanks for your support!)


#18

Hi Nick

Many people suffer with mav without the headache. Headache or history of headache do not have to be present for the migraine diagnosis. I don’t get migraine headaches. I think you need another doctor. Pain is a symptom of migraine but there are many others too.I was told I had lab in the past and it’s a common misdiagnosis.

Follow the diet and lifestyle changes and continue with the ami until your appointment. I take nortriptyline which is a newer version of ami, thought to have fewer side effects. I also take magnesium glycinate and b2 - 400 mg of each are considered to be helpful for migraines. I started the supplements at the same time as the drug so I can’t say how much they’ve helped but I wouldn’t stop taking them. The nortriptyline is definitely the the thing that got a lid on this. My symptoms eased over time so it’s hard to say how long it took exactly but probably a couple if months. There’s no magic cure I’m afraid, nothing will work straight away or over night. If it’s migraine, your brain is in an irritated state and it took a long time to get that way so it will take time to calm it down. You can get better though.


#19

Thanks Scott. Once we understand the issue then it is matter of finding the right med. But the question is how do we cope till then ? There should be some way like anti anxiety or some way to cope with the symptoms till we get he magical pill !


#20

Do you have any anxiety to start with ? I once tried Bromazepam. The swaying and dizziness was worse than ever, I had to hold on the walls while walking. It’s just that I didn’t care at all about it. Besides that I felt like a ghost on it …


#21

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.


#22

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


#23

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).


#24

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


#25

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.


#26

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


#27

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.


#28

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.