That is the annoying part. I didn’t get headaches either, had I maybe a GP would have realised what it might be instead of saying it’s BPPV, then, later GP said ‘anxiety’. A friend who gets migraine diagnosed me and we laughed when she said my attacks sounded just like her migraines but without the headache! How right she was. As my MAV morphed I’ve had head pressure, always rear and sometimes sides but not headaches. It wasn’t til my MAV had been chronic for a couple of years, then, my first aura! I couldn’t be.ieve it but it did confirm … Helen
Yes Helen, I agree GPs are so quick to say anxiety! I tried explaining that of course I am anxious but it is infact because of these blooming symptoms! Took the best part of 12 months and me sobbing in the room that she then decided maybe I should be seen by a neuro, talk about hard work. At the time I was so devastated that she just didnt believe me - looking back im sure she didnt not believe me but she had a budget and clearly was happy to diagnose anxiety without further investigating.
Anyway MRI revealed MS… so then MAV has taken a further 6 years to diagnose and is now chronic! Pfffftttt
On a brighter note Amitriptyline and I appear to be best pals at the moment
Glad you are happy on Ami.
Symptoms can very much overlap I believe. How do they know which are which. Just out of interest. Helen
Well I have some symptoms that do overlap which is why the MAV has gone undiagnosed for so long I guess. I had brain lesions but recently read a artical that migraine can cause these specific white matter lesions so I was quite interested in that fact! I did have some specific MS symptoms like numbness on various parts of my thighs and that lasts for week’s/months. There are so many overlapping symptoms that it boggles the mind. Im just glad I know now that I am not going mad!
Hi there. So sorry you are suffering with both MS and MAV. I am sure it is all autoimmune as I have ulcerative colitis as well. Have you tried LDN for your MS? I am very interested in it but Doctors don’t seem to know much about it? Thanks R.
Anxiety is a strange thing in all its forms. Pre-chronic MAV I’d never experienced anxiety. Didn’t really know the meaning of the word. With episodic MAV, bad as it was with regularly 72 hours constant rotary vertigo, I never was anxious, either during the attack or by worrying between attacks. I always assumed the most recent attack was the last one and it wouldn’t ever happen again, and got on with living. This was helped by the fact, for many years the attacks were quite well spaced out and I experienced absolutely no symptoms between. Everything settled as if the attack had never been. I think it must have been from when my MAV turned 24/7 constant I first felt some anxiety. I used to wake up with a tummyful of butterflies as if I was about to be shot I always described it. Luckily, as my anxiety was MAV related, as symptoms declined, so did the anxiety. But sometimes, just sometimes … and this morning was one if those sometimes, i woke up very early, and feeling a bit, not a huge amount, just a bit anxious. First time for months. Might sound daft but I think that was my body forewarning me of the forthcoming event. I say this because, although I know nothing about psychology, I did have a session once with a psychologist who introduced me to the concept of ‘Body Anxiety’ which, he said, is where the brain is aware of bodily changes, due to introduction of meds or changing symptoms of chronic conditions, and that brain doesn’t take kindly to changes. This was how he explained my early waking with anxiety. Helen
Hi Ruth, my dad is actually one of the people in my life trying to get me to look into CBD oil and I have to a degree but I am worried these ones you can buy in vape shops and such are not quite what they appear to be and so I would probably only feel comfortable having it prescribed by my GP or neuro, however my MS is very mild and doesn’t cause too much trouble. It is the MAV trying to completely kill me off!! I am sure the two have to be linked in some way too. Its almost close not to be.
I once said to my Neuro in jest “Oh so does this mean I havent got MS then”?! To which she replied no it doesn’t.
So here I am.
Hi there.I have tried the CBD oil,hemp oil in Holland and Barrett and don’t think its strong enough to do anything!It seemed to make my eyes redder than normal! You need the THC for any benefits I have read.What makes your Doctors think that it isn’t the MS acting up? MS is another disease they don’t know much about and I have read that you can just have the one attack and nobody would even know. It can cause bad vertigo.I doubt my diagnosis of MAV. Whatever it is it is horried!R.
I don’t think CBD is a silver bullet. Remember when MAV is really bad it’s hard to notice anything that helps. Even meds can take 3+ months to work. My MAV is pretty mild at this point and lately I’ve found CBD helpful for prevention and sleep. And it doesn’t have any THC. CBD isn’t cheap, and I suspect as any preventative it takes time to be effective.
Hi Erik. I agree it takes time for anything to work and you have to be patient. I was only diagnosed last year and probably had MAV,if the specialist is correct,for many years. I have a load of different issues going on which probably all contribute. Can I ask,if allowed which CBD brand you are taking and at what dose?R.
I’ve been taking this one:
50mg per night
I’ve heard Charlotte’s Web is another popular one though.
Thanks Erik.I will look into that.Much appreciated R.