This is entirely a mental challenge.
Thereās very little āunsafeā about going out for a walk in nature. Symptoms are largely just āfeelingsā.
The more you go out the more used to the symptoms you will get and the easier going out will become. You canāt let this condition stop you. Fight it!
Itās important to note that if you sit around your loss of compensation is just going to get worse, so is very counter-productive.
Anxiety about your symptoms is completely normal with this condition and itās yet another challenge to overcome. But overcome it you will.
I highly recommend you find a psychotherapist who has experience with vestibular patients. Use a therapist to talk about your concerns and seek reassurance from them. Try not to use medication to control your anxiety if at all possible (because these will have side effects).
Getting anxiety under control is really important for both your long-term improvement and your current quality of life.
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My migraines were definitely one-sided but I never recorded which side and whether one side more than the other. However, I bet there were more right-sided ones! I hardly get migraines at all now but the right side of my head, neck and shoulder has been a mess for years! Hissing tinnitis in the right ear, constant low grade neck pain down the right side, stiff shoulder on the right. My balance has been a bit off lately after a long period of it being pretty normal. I thought that the whole Covid-19 drama would bring on a VM attack in me for sure but for the first 6 months I was fine. [I have a theory that adrenaline is very helpful for VM]. But about the same time as COVID fatigue set in, my symptoms returned, though not too severe. The occasional rocky unsteadiness is a bit of a worry though and listing to the right as I go down my hallway is quite weird.
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I have always been under the impression the one sided thing is very common and virtually diagnostic of migraine.
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True, migraines are usually one-sided. This is the first question you often get asked by doctors diagnosing headaches. But does the side switch around randomly from left to right or is one side favoured for a particular person? And if it tends to be always one particular side does that become the same side that gets the later troubles of VM like fullness in the ear, tinnitis, some hearing loss, the ābadā side for rotational vertigo etc For me, my right side is definitely my bad side but I donāt remember if thatās the side I used to get my migraines on.
So you donāt get migraines anymore? (obvious ones, letās not for a second debate if the other symptoms are āmigrainesā)
How frustrating you canāt remember. It would be good to know. Iāll never forget my worst side is my right side. The bed sores always on the left elbow and left buttock. I notice the difference in faculty between right and left doing balance enhancing exercises too. But then again there are other considerations that can muddle the waters. As we each have a dominant head we too each have a dominant leg. Also which side you normally sleep on affects heart and bloodflow. One side though at this minute I cannot remember which is causing contraflow. Then of course our seemingly random selection most probably isnāt. The brain is selecting for sure. Whichever side later becomes worse there must be many factors to consider in working out why. Far too many Iād say though I havenāt found other MAV symptoms to be one sided apart from the tinnitus which only goes to my better left side as a last resort. Full ears always come in pairs. But then again I havenāt suffered a long history of classic migraine.
I do very occasionally get migraines James but they are way milder than the migraines of my young adulthood. I keep a script for Imigran (sumatriptan) always filled but it keeps expiring because of how infrequently I use it. One-sided is the clue for me that it is a migraine and persistent, so drinking water or taking Vit B2 doesnāt get rid of it like it does other headaches. But I cannot emphasis enough how much less painful and bothersome they are these days. Half an Imigran tablet (so thatās half a 100 mg tablet) will quench it completely within an hour. I may need a second dose the next day but that will be it. Going through menopause made a huge difference so I think hormonal triggers were a big factor for me. Now I rarely get migraines but I have this vertigo thing which could be VM, could be Meniereās, could be a bit of both or could be something different.
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So true and youāve listed some excellent ones. I just try to open my mind to a flow of information, whether it be medical papers or comments on this website or peopleās personal experiences or my own, in the hope that something will gel one day. Iām interested in the role of the trigeminal nerve in migraine at the moment and tend to selectively zero in on that in the general flow of info.
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Trigmenial nerve, eh? I too had a go at that one backalong. Bit of another dead end I found. Guess you have search this site (which should lead you to tons of comments about PT/physio work and stiff necks etc + other relevant interesting stuff) and read my PD where I touch on it quite lengthily very shortly after a physio touched on mine quite literally. Brought on the longest vestibular attack ever, eleven days I think at least. The physio and I parted company shortly afterwards. She ran. Not me. She had previously said it was a question on establishing how far she could go without actually causing a problem. So sheād achieved her target I guess. Mind you now I know exactly where the Trig nerve is I would feel obliged to kill anybody who ever tried to manipulate it in future anyway.
VM/MAV causes and symptoms are so complex being as the vestibular system affects the entire body and being one way or another and the individualās reaction to it again must be so complex being heavily reliant on each individualās various sensory faculties competence levels which is I suspect why medics donāt even attempt to give any answers. They donāt seem to do ācomplicatedā. Before being ill I had always assumed any case deemed ācomplexā or ācomplicatedā would result in great medical interest and an ongoing referral to some Research body or another. Once designated a ācomplicatedā case myself I discovered the real truth. They canāt wait to get you out the door. Helen
Ugh! That must have been horrible! Iāve never been incapacitated by vertigo for more than 24 hours though I know I can expect a long period afterwards of ongoing vestibular symptoms till I get back to normal (or near normal). But there is obviously a strong connection with the trigeminal nerve, yes? I read this on a website āAlmost all migraine sufferers have a problem with a specific part of the nervous system, called the trigeminal nerve. The trigeminal nerve is a network of wiring that attaches to special sensors. When the system does not work properly, electrical signals set off a slowly moving wave of electrochemical activity across the surface of the brain [giving rise to the unpleasant symptoms of migraine]. This abnormal wave of electrochemical activity Is often stimulated by several different stimuli. These stimuli are irrational signals from other parts of the nervous system, such as stress, irregular sleep, a flashing light, a range of food ingredients, weather changes, and noise.ā
Which brings us back once again to the commonsense advice: AVOID YOUR KNOWN MIGRAINE TRIGGERS.
My first vertigo attack back in early 2006 coincided with me getting a lot of major dental work done. I was in that dentistās chair often and for long sessions. I think itās quite possible that my trigeminal nerve got over-stimulated, inflamed or even damaged at that time. This is a different theory to the āmigraine sufferers have a problem with their trigeminal nerveā one described above, of course.
Always very interesting (and refreshing!) to read your posts Helen. Like others on this forum, youāve obviously battled very hard over the years trying to understand and fix your problems, often as a lone fighter. I admire you for that.
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Perhaps they should add āand bring stimulated by a physioās nimble fingersā to the stimuli list!
Fantastic in theory the trigger avoidance creed. Just wish it was easier to implement. Cheese, chocolate, citrus and red wine easy enough to avoid. Storms, gales, snow, fog and such rather impossible particularly when them being outside the window still counts and totally impossible when light levels are a main one.
Dizziness/vertigo commonplace during and after dental work according to my dentist. Have met others on here and have a personal friend who had vertigo for a week post dental work years ago and sheās no migraineur nor until then had she ever experienced dizziness in her life. The trigmenial nerve links up there for sure. The day the physio manipulated mine I had instant sensation of dizziness and sort of electric shock down through my lower jaw. Canāt remember which came first they were so close together. Problem with the human body itās all joined up! Trig nerve definitely linked though I have yet to discover any advantage to actually knowing that as yet. You?
Btw it will be seventeen years come December and still counting. And the first fifteen on my own.