New and need some help & have questions

Hi
I’m new here, I’m 53 and have been suffering with this for 9 months. I really am not even sure of what I have. I have rocking/swaying sensation most of the time. I have an array of symptoms, anxiety daily in some form, rocking/swaying, falling sensations at times, lately feel like when I’m sitting i’m leaning to the left, neck and shoulder pain and tension, headaches that make my dizziness much worse usually for 2-3 days, nausea, when looking down or bending forward feel like I will fall, most of my rocking dizzy thing is when I sit and stand, I have it for a bit when I go to bed but it stops, my head pain is mostly in the neck area up to the front of my head, not usually on one side, my vision is off at times, usually before the dizzy headache comes on, sometime its off with the anxiety and panic i have, when I go in stores I have anxiety but I think its from fear of something going wrong, I did not last week I went to 3 big stores and when i got home i was dizzy and off balance for the night. I have anxiety disorder, so thats not helping me. I also am hypothyriod and when this started last july, I went to my GP who said it was my BPPV back, but the eply’s did nothing, and the neck and head pain was so bad then I went to my neurologist and he did steroid trigger point injections in my upper shoulders and at the base of my skull for the dizziness, well that had a very bad chain reaction onmy thyriod meds, the steriod sent them out of my system and I became so anxious I couldn’t function, we are still working on geting the levels right. So after all this I went to my ENT who is a neuro-otologist and we did the VNG test but when I got to the air in the ear part I got so dizzy they had to stop the test, so he said because of this he can’t tell what is going on, but since I have the headache with dizziness, he thinks it MAV, my quesation is how can anyone tell? I mean I have a headache yes about every 2 weeks that last a couple of days with the worsening dizziness, but not daily and but do have rocking dizziness almost daily, I can get a day or two break in some weeks.

I need help with how to tell, what exactly are symptoms? The ENT wants me to start taking topamax but I can’t, I read all the horrible reviews on it and I’m so sensative to meds I just can’t try it. He said the only way to know if its MAV is to try all the meds and if it goes away then thats what it is. Thats rediculous.

I am also seeing a chiro 3 days a week and have noticed lessening neck shoulder and head pain. Can anyone help me, i"m just lost with this. I also do VRT daily and when I increase the movements in the gaze stabilization exercise I have more dizziness for about 3 days. Is any of this normal to MAV? Please if you can help I would appreciate it.

Thanks you so much

Have you tried to work on your diet yet ? Eliminating certain things and supplementing vitamins ?

Hi Frank183

I am not a salt person, so i’m able to do that ok, I drink decaf everything and have cut out the chocolate. With my thyriod disorder, they have found my b12 and d3 where low so I’ve been on that for about 3 months and its slowling going up. I take multi vit, magnesium 400mgs, vit 3, vit c 1000mgs, b12 500mcg, d3 2000mgs daily.

My biggest quetion is does my symptoms sound like MAV?

Hey there,

Yup I have your symptoms exactly - when they are not blunted by medications and triggered by lights, that is…

Gabapentin has helped enormously. I can only tolerate up to 200mg 3 x a day so far, but may try to titrate up slowly to see if that helps more.

Magnesium glycinate at 800mg (split in 2 doses per day) is also helpful to me. B2 as well at 400mg a day has helped.

Find a neurologist and try anti-epileptic drugs perhaps! I’ve had the best luck with gabapentin (least sx for me) but topamax has helped others, as has nortriptyline and others.

I want to stay working in my profession but if the gabapentin can’t blunt the sensations a bit better I may have to find a profession that is not under fluorescent lights as much. No idea what that would be. That’s scary to me so I’m trying my best to get better!!

Best wishes,
Liv

Yes, it sounds a lot like MAV.

However, there is no clear scientific proof, such as a lab parameter or an MRI/XRay or anything like that. Nothing that could say for sure “yes or no”. It’s only about the symptoms. This in return applies to a lot of common diseases such as the “regular migraine”.

Therefore I agree with your doctor that the only thing you can only try meds and see if they help or not. However, I clearly see your concerns about “hard drugs” such as Topamax. So before you go down that road you can try a couple of “softer” approaches.

Keep on working with your vitamins. I also take that what you do in comparable doses, but I also added zinc to that which appearantly helps me a great deal. For some reasons however they only work if I dissolve them as powder in water or if I suck them like candy. Capsules just seem to pass my body without any noticable effect.

Cetirizine: this is a 2nd generation anti-histamine. This helps me a lot, particular in an acute situation. Again, i take this in liquid form and suck on it a couple of minutes (about like if you are drinking something with a straw). They are supposed to make you sleepy, but for me it doesn’t happen. If this should work for you, then you should take a look at histamine intolerance and adapt your diet to it.

Dimenhydrinate: chewing gum against travel/motion sickness, in the US this goes under the brand “dramamine”. This is very helpful in an acute state of vertigo/swaying. Takes about 30 minutes to feel noticeably better. This does however make sleepy and also makes the mouth very dry. But still, very very helpful.

A few more questions:
you said you experience problems in grocery stores. Do you also experience problems

  • driving in a tunnel or just driving in general ?
  • walking down a long narrow corridor like in an office building, appartment building or hospital ?
  • with flickering lights or flickering candle lights ?
  • any other rhythmic visual impressions such as a flag in the wind or people fidgeting with a pen or anything like that ?
  • with neon lights in general ?
  • with strong contrats such as bright lights at night, such as traffic lights at night, neon lights, huge screens with flickering advertising (like they have them in Vegas ?

Besides, do you experience any “female issues” you hadn’t before ?

Side note: decaf isn’t necessarily helpful, don’t ask me why. Same for non-alcoholic beer and wine. I once had a bottle of non-alcoholic wine at a party (didn’t want to sip water all night) and the next day was one of my worst ever.

If you can, just stick to water for a couple of days, even if it is hard.

Also, staying away from gluten has helped me a lot even though the test for gluten intolerance was negative.

Best regards
Frank

I agree about the gluten. It’s really weird. Days I have it, I have a lot more bouncing sensations.

Hi.

I’m sorry you are going through this. I have read on this forum that MAV patients can’t tolerate the caloric testing you are referring to. Plus, if one gets dizzier due to VRT, that pretty much shows they have MAV as well.:

http://www.mvertigo.org/t/does-caloric-eng-testing-makes-mav-people-sick/7917/2
There are other discussions about this on this forum, as well.

http://www.mvertigo.org/t/mav-and-the-eng-test/1727

Having said all of these, yes, all your sx are possible with MAV, BUT I am not saying that is what you have. I would guess that, but you need to work with a bunch of drs and listen to your heart to really come to that conclusion.

Finally, decaf coffee sends me to the world of whirling, almost - can’t have even a single cup of it :frowning:

Best wishes,
Asli

1 Like

Hi Frank

Thanks for your info. Do you take meds for this? You mentioned an anti-histamine, how does this help? I’m in the US so i don’t know what meds this would be. I know about dramamine, have never used it accept when I took a cruise 34yrs ago for sea sickness.

I can drive, i just get anxious doing it because i’m always afraid something will happen, I am anxious all the time now
When walking in corridors I focus on something at the end of it
Flickering lights have bothered me for years along with the noises they make
I noticed lately when its windy out, i feel like it will push me over
Driving at nite is alittle odd sometimes, the rain driving sometimes bothers me
abstract floor patterns bother me

Female issues, I’m post menopausal but who knows if hormone levels are still dropping. I also am hypothyroid and my TSH levels have been off, but I had this dizziness thing before the levels went off.

Bending forward in any manor, like tuning on the shower, doing dishes, or just leaning a bit forward to grab something is bad. Also taking a shower is awful, when washing hair i feel like the floor is dropping and when leaning over to shave my legs and go back up I feel like my brain is bouncing all over. Is all this part of vestibul stuff. I don’t know anymore bout anything. I can’t keep up, I’m trying so hard to get well, by going to the chiro for my neck and back, the VRT, the thyriod and i’m not well. I’m depressed to the point of cying all the time and so worried about maybe they have this wrong and i have a disease.

I do appreciate your help and thank you so much.

Get on gabapentin if you can. It’s given me my life back. I can drive and horseback ride even no problems. Liv

Dizzy62: in the US cetirizine is branded as “Zyrtec” and “Reactine”. It is actually meant against hay fever and other allergies. But it has (at least for me) an off label use against vertigo. It blocks the H1 receptors against histamine which can irritate the vestibular system. It has been on the market for decades already without having done any harm to anybody, so by now they sell it OTC in pharmacies. You’d just have to try it. If it should help you then you might check your diet very closely for things containing a lot of histamine. If it doesn’t help you … well, then histamine is not your problem.

About taking a shower: at home I have only a small and narrow shower stall and this is always very uncomfortable, particulary when bending my head. However, if I take an outdoor shower, let’s say at a beach or at an outdoor pool I’m doing just fine. You might want to try this if you have a chance and compare.

My doctor who is a long standing specialist for vertigo (he’s part of a European research group) told me that they believe that if the vestibular system is a bit like a computer that has to process very rapidly a lot of data: visual impressions, auditive impression, movements of all sorts and if this “computer” gets into “overload”, then it creates “discomfort” to signal that it can’t handle it anymore. Which can result in vertigo, nausea, sinking feeling, feeling of weakness, anxiety, etc.

You can overload any given healthy person with stroboscopic lights, rollercoasters, noises, etc. if you just expose the person to enough of it. People like us are (for yet unkown reasons) very sensitive and our threshold for overload is rather low. He said it’s just a theory and they have nothing to prove it, but I thinks it is most likely to be that way.

I always hated flickering lights or any kind of rapid rhythmic back-and-forth-movements, but before it just caused annoyance. Eventually it caused vertigo. I always hated crowded places, for example busy airports. I had always thought this was more a psychological thing. But by now I believe that it imposes a big workload on the vest. system, because you have tons and tons of movements hitting the eye nerve. So many people who approach you, move away from you, cross your path and all that in all sorts of different directions and speeds. The brain needs to “calculate” all that to figure out what it “means” for you. Slow down, stop ? Make an evasive move to the left ? To the right ? Any danger ? With those tons of people very hard work. Then, add all the noise to that, all the voices and noises coming from all sides, you probably know what I mean.

And yes: vertigo definetely creates anxiety. It makes you extremely unsecure. It crushes your self-esteem. It makes you over sensitive to any sign of discomfort, it makes you extremely vigilant. And when you can’t find a cure or even just a diagnosis over a longer period you eventually become desperate and depressed.

So, my best recommendations for you are to try Zyrtec or Reactine. For me it takes a couple of hours to have an effect. So, I usually take it as a precaution in the morning when I expect a “difficult” day, for example when using an aiport.

Also try Dramanine again when in an acute state of vertigo/swaying. For me after about 30-60 minutes it brings a very noticeably relief.

See what happens and go from there. If this doesn’t help, then you might have to go deeper and try things like Topamax, Gabapentin and the like. But at first I would try the “softer” things.

Best regards
Frank