Anxiety arghhhhh

Hi Guys,

in need of a bit of encouragement really. Felt quite low the past days and I am so so tired of the constant battle with this rubbish. What I wouldn’t give for some relief!

A couple of weeks ago I had the strange sensation of my right arm feeling numb / pins and needles and somehow detached from my body. Although the feeling was extremely uncomfortable the one good thing was that my unsteadiness seemed to ease up. It was almost as if my mind didn’t have the ability to give me 2 horrible symptoms at the same time. Maybe this is a good sign, that when I am dealing with something else the dizziness is lesser so one day it might actually go… who knows!

Anyway… since I no longer have the feeling in my arm my dizziness / unsteadiness / disequilibrium is back full bore and my anxiety has also ramped up tonnes.

I am still on 10mg of Nori which up until the past week seems to have had my anxiety under a certain amount of control but currently it really isn’t helping at all. I have upped the dose to 15mg last night and will try upping it slowly over the coming weeks to see if this helps both with my symptoms and anxiety.

I seem to have developed a real strange phobia of the sky… its like if there is a big blue open sky I feel really anxious, whether that is from the intensity of the sun or a feeling of disorientation due to the vestibular problems I do not know, but it is really really horrid. Sunny days should bring joy, not despair. Funnily enough, if I am out on my bike I am not focused on these odd feelings so it doesn’t bother me as much.

I spoke to Dr S earlier in the week (before the anxiety started kicking in) and he has said the mind gets anxious because it is constantly trying to protect you from falling over, dealing with the MAV. This means there is no free RAM (for computer geeks) / memory which it can use for other tasks and it becomes easily tired and overwhelmed. He re-iterated that the reason I feel unsteady is because my mind is in a heightened state of awareness even though it doesn’t need to be and its manually working to make sure I do not fall over, even though I don’t need that extra support.

I wonder about asking Dr S about taking propranolol also, as others seem to have had success with that med recently.

I am really going to look into seeing a CBT therapist now as the anxiety is just so overwhelming at times…

Thanks for listening to my rant! :slight_smile:

Hi Richy

Sorry you feel like this. Unfortunately this condition brings anxiety

I personally think CBT will be great idea for you. You also need to try and up the Nori that will help your mood and the condition

Hi Richy,

I am sorry to hear you aren’t feeling too good at the moment. I understand how horrible the anxiety is, struggled a lot with it myself.

I would definitely recommend CBT. I think you will find it helps a lot. As you probably know I have been taking propranalol and it has worked wonders for my anxiety. However I also take 50mg Sertraline (Lustral) so that may also have helped me get the anxiety under control. Pre MAV I was taking one tablet of Lustral every other day, a pre therapeutic dose really. Since MAV I increased it to taking one every day.

It sounds very much to me like the anxiety is exacerbating the condition. Seriously, find a good therapist, speaking from experience, it will definitely help.

We are all here for you to chat too and help you through this. As you know there will be good and bad days but I do believe that in time the good will outweigh the bad.

Take care

Kathy x x x

Thanks both of you for your support.

I am definitely going to try finding a CBT therapist and get some help. I don’t think i’ll ever get better unless I get this damned anxiety under control

Bummer dude. Hope it goes soon. None of this is permanent so hang in there.

Hi Richy.

I think you just described me :slight_smile:

Sunny days with wide open blue skies always, always bring on more disequilibrium and then anxiety for me. (Plus the high barometric pressure that normally goes with sunny days causes my head scars {4 surgeries} to hurt…) I live for grey or grey & rainy days. It’s the same reaction I get in big stores.

Sounds like Dr S explained the same way my doctors have. Mine put it this way - when you wake up, let’s say you have 100% of energy before you get out of bed but your brain needs 65% of that to function because brains are energy hogs (talking normal, non-MAV brains) but because you have MAV, your brain needs 85-90% of your daily energy to function because in addition to all the usual stuff it has to keep you upright and process (even incorrectly) all those wonky signals. That means that the 10-15% left is what you get to use throughout your day. If you need glasses (as I do), your visual signals mixed with the MAV takes even more energy. Is it any wonder we are exhausted? :?

I should add that sometimes we wake up with less than 100% of energy because our symptoms can keep our brains busy even when we sleep. It sucks.

I think you are on to something about how your brain doesn’t notice other bad symptoms when it’s dealing with another. Right before Christmas I broke my femur (well, one of them) in a fall. I spent 12 weeks on a walker and while I did notice the MAV stuff I didn’t give it much time because my leg hurt so much and using a walker to get around and do just regular daily stuff was so time-consuming. Then I had surgery to put pins (long screws really) in the femur and for 3.5 weeks I was in constant, horrible pain and I rarely thought of anything else - even on pain meds. And funny thing - well, it wasn’t really funny, just interesting, I had an intense bout of food poisoning at week 3.5 that lasted 18 unrelenting hours. Blech. It was awful. But - when it was over, the intense post-op pain was gone. Just gone. It’s like my brain rebooted. I do agree that sometimes our brain picks which symptoms to give precedence to and it can reset our system (not permanently unfortunately but still…). That’s just my theory though. I’ll get the chance to test that two more times this year as I have 2 more ortho surgeries to go.

I too have had a devil of a time with anxiety. The first few years were the worst. I have a script of Klonopin filled to use if either the disequilibrium or anxiety gets too bad on any given day. What helped more than that was CBT. I went pretty regular for several years. Plus, there is a book on medical anxiety that had some helpful ideas - it’s called It’s Not All in Your Head by Gordon J.G. Asmundson and Steven Taylor. It’s not for MAV specifically but it had some good ideas.

It is difficult to consider when you are wrapped up in anxiety or anxious bouts but I found two things to be helpful - one is not to fight the anxiety or anxious feelings. By this point you know they won’t kill you or maim you (one of my earlier fears) so they pass by more quickly and less ramped up if you can just say “Okay, hello anxiety, here we are again” or whatever works for you. The second thing is to train yourself to not focus on it (anxiety) so much. The first thing helps with the second. When I would find myself all wrapped up in thinking about the anxiety symptoms or bouts or worrying when they would arrive again (which did make them do that), I would picture a blue balloon full of those worries and then letting it go to drift away. Sounds silly but it worked for me. In the beginning I had to do that many times a day but then it became less and less and I had more anxiety free moments in-between setting those metaphoric balloons free. Then when the anxiety hit again, I’d say “Oh hello. You again. Well, let’s get through it.” and I’d either sit quietly and focus on my breath or keep about my day (if it wasn’t too bad) but either way I’d tell myself that this was just business as usual. I don’t know if this will help you but it worked/works for me.

Unfortunately for me, and I’m only speaking for myself, my symptoms do appear to be permanent. I wish they weren’t but after 13 years I don’t think they’re going away. I must add a disclaimer here so that you don’t lose hope - my symptoms are a mix from full-on MAV, SCD in both ears and I had a brutal brain aneurysm surgery years ago that left an impressive scar that reacts swiftly to any barometric pressure change with pain and pressure. All the other symptoms can be attributed to either MAV or SCD as there is a lot of overlap. All I can do is keep tabs on the SCD with regular tests and work with the rest (I’ve already had surgery for one ear - hoping to avoid it for the other). Each day my symptoms are different, ranging from very slight to debilitating and I arrange my day around that. I used to waste a lot of time wishing things were different but try not to do that anymore. It’s time I could spend doing something else.

Anyway, I’m wishing you well.

Hi Richy,
Have you had a history of anxiety, or is it just due to the MAV stuff?
Besides the Nori, are you taking anything else, or have you taken anything in the past?
I know that some people might disagree, but my Doctor told me that Nori isn’t that great for anxiety. You might want to consider going over to Amitriptyline since it is supposedly better (more serotonin action). Keeping in mind that 10mg is quite a low dose.

— Begin quote from “scott”

Bummer dude. Hope it goes soon. None of this is permanent so hang in there.

— End quote

Best thing ever said on this forum. We all need to remember this!

— Begin quote from “rockyksmom”

Hi Richy,
Have you had a history of anxiety, or is it just due to the MAV stuff?
Besides the Nori, are you taking anything else, or have you taken anything in the past?
I know that some people might disagree, but my Doctor told me that Nori isn’t that great for anxiety. You might want to consider going over to Amitriptyline since it is supposedly better (more serotonin action). Keeping in mind that 10mg is quite a low dose.

— End quote

Hi Kelley

I guess I have had episodes in my life where anxiety has affected me, but it has affected me the most since suffering with MAV. I am going to try upping the Nori really slowly (currently on 15mg) to see if that helps with symptoms etc… thanks for your feedback, really good to know about the Ami option. Will discuss that with Dr S depending on how the Nori goes.

thanks all for the responses. MsMolly your tips may really help me regarding dealing with anxiety. Would be interested to know how you deal with the anxiety that comes on Sunny cloudless days,


Hi Rich,

I just sent a PM about sunny, blue sky days.

Basically, I just work with it. I don’t look up (unless I’m at an air show!); I stay indoors if I can’t get the anxiety and disequilibrium to ease down after using different skills and/or meds. These things are 1)sitting and focusing on the breath for 10 breaths at a time if I’m hit with a lot of anxiety, 2) using the balloon analog to let go of individual anxious thots, 3) getting busy with something else to redirect my focus, 4) possibly taking meds if I really want or need to be outside and 5) go indoors and take a break for 20 minutes - sometimes that alone is how I get through a crazy bright, sunny day - I stay outside for 20-40 minutes, then go inside for 20 and just sit or lie down (no TV and no reading - just let your brain rest). It can be frustrating to even need to do this but I have found that it works.

Hope you are having a good day today,