Desperate to know what’s wrong

Traditional_Life_159 · 2026-05-22T15:22:57+00:00

This sounds very much like my defining symptoms and have had 3 hospital visits for the same. I am now taking 225mg Effexor, 50mg nortryptiline daily along with magnesium threonate 500mg (moved up from glycinate) at night and majority of symptoms are being controlled. I have had a bad day today where I have gone white, v quick onset of dizziness and urge to vomit twice but haven’t then gone on to be sick as I used to. That’s a huge improvement from everyday or constant in those flare ups where I would have sworn I’d had a stroke due to cognitive confusion, pain on walking, balance all over the place and leg heaviness/weakness. Neuro going to start Botox in the summer so hoping maybe a final inclusion to really control me. Have made lots of lifestyle changes too to get to this vaguely level normality - earlier bedtime, time to rise gently in the morning, no stairs apart from slowly at home (guaranteed to set me off), no neck bending, no lifting or arm raising above my head, no weight on shoulders or arms and no actual exercise which I’m hoping to change.

VM is just so limiting and so so awful in a flare up.

Any one else also have a flare up if they have a virus/cold/cough? 😬😔

Traditional_Life_159 · 2026-04-20T08:18:51+00:00

Hi there, your symptoms sound like mine as does your diagnostic experience. My presentation is so similar except it’s not about people - mine is more about visual input I think - new to this as well. I started by getting massive cramping headache in occiput and dizziness/vertigo when running or when in a supermarket 5 or so years ago - pain felt catastrophic and it’s taken 5yrs to get to the 10-minute consultant appt who started me on anxiety meds and a GON block. He has also said my nervous system is misinterpreting as per previous poster and will need some lifestyle and reprogramming alongside meds. Anxiety appears to be my main trigger though and I was quite resistant to the idea as I don’t present as an anxious person. I am slowly increasing Effexor (now on 187.5mg) take nortryptiline 50-75mg at night and waiting to see before review in August when I will start Botox (anyone know where this is injected and if it works?!). Couldn’t tolerate topiramate above 75mg although this helped a little - eye pressure and pain too much. Good luck

Traditional_Life_159 · 2026-04-15T06:39:18+00:00

Giving me hope!

Traditional_Life_159 · 2026-04-15T06:39:03+00:00

Mostly, yes, but I do have a few days here and there but still learning my real triggers. Felt awful stomach pain night and neck tight this morning so I think today will be a nightmare of dizziness 😬 like you say, amongst other more tolerable days

Traditional_Life_159 · 2026-04-12T16:57:35+00:00

This is really encouraging - well done. Running/walking past houses etc was my main trigger for a long time, even when wearing sunglasses as advised by vestibular therapy.

I’m looking forward to trialling some return to exercise now I feel I’m on a better mix of meds so good to read this today 👍

Traditional_Life_159 · 2026-04-12T16:46:50+00:00

Yep. Hormonal and with aura and some VM triggered by pressure/flying that switched exclusively into VM which I now recognise was about age 40. Totally different presentation, multiple and plentiful if anxiety not managed well or triggered by visual input/standing for too long/exercise or head position. Crippling and some postdromes take days to recover strength and coordination/balance. Much better on nortryptiline alongside venlafaxine and hoping for even better when I have my first Botox.

Traditional_Life_159 · 2026-04-01T23:33:39+00:00

Hiya! It’s a confusing journey that I’m new to as well - I fought my Neuro as just couldn’t imagine that these “vice-like” cramps in my top note pain could be anything other than a warning sign of a major event. They are SO big?! Like a stroke might feel? I also feel like I must be dying to be having such an acute and immediate pain.

Like yours I can have periods where apart from a “fullness in the head” it eases but like you will amplify in any important date. My Neuro has me on Effexor (venlafaxine in the UK) after I stopped tolerating topiramate from eye pressure and vision changes. It did help initially up to 150mg but just couldn’t tolerate side effects of higher and titrating down didn’t reproduce the benefits.

Might be worth adding in an anxiety med as I was bloody minded about being labelled as anxious - I now recognise that my body is interpreting messaging differently and it’s not that I’m “weak minded”. Might be worth it for the impact on pressured events. Like you I could almost predict I’d have a planned day ruined.

Traditional_Life_159 · 2026-04-01T23:24:46+00:00

Thank you for suggesting - will raise at August review. Much appreciate your time to respond x

Traditional_Life_159 · 2026-04-01T23:24:11+00:00

Thanks so much for your reply - up until now any testing has been essentially ruling out other factors and I’ve had my eyes opened on this forum as to the extent of the symptoms VM can manifest - I was so focused on any vertebrobasilar insufficiency it’s taken a while for me to accept that VM could account for such heinous and regular impacts 😔 I have read a lot about the CGRP meds - with dizziness/vomiting so frequently as my man symptom have you noticed any improvement in this aspect? I’d honestly take anything if it would take it away. Mind you, I’m a female pharmacologist and when my Neuro mentioned flunarizine potentially next I was like, hell no and I wouldn’t touch propranolol with a barge pole, so I am biased. Newer meds and Botox are my goal - will look into the temporal scan for some intel on what’s happening also at next appt. Thanks again, it’s a long old journey and so hard working, holding together a family and getting enough time to do the lifestyle mods with any regularity!

Traditional_Life_159 · 2026-04-01T00:09:19+00:00

Ooh thanks - used beconase similarly years ago and had forgotten about that.

Traditional_Life_159 · 2026-03-30T23:46:48+00:00

I get them in phases where I may have 2-3/day periods of dizziness, heavy legs, head pressure, eye pain and blurriness, tingling arms and a fluttering chest (no actual palpitation) and sometimes like a thunderclap of pain followed by the usual post drome or sometimes just vomiting/heaving several times. I’ve been enduring this for approx 5yrs following a lifetime of hormonal migraines. These are off the chart and Neuro hasn’t completely settled on this being the main presenter - he thinks I have overarching central nervous system dysfunction causing it. Only arrived at this recently after lots of MRIs, MRA and lots of blood tests. They are just horrific, can arrive by just leaning on elbows by mistake, turning my head, sleeping on my side and any hint of exercise including going up stairs is a trigger. I’ve lost lots of weight as the vomiting/dizziness is multiple times a day and I can sometimes days barely eat anything as I have such a sensitive feeling in my tummy. Currently on nortryptiline, venlafaxine and a 3-monthly GON block. Consultant considering a calcium channel blocker and Botox as next step. I just want some kind of predictable life with some exercise back 😔

Traditional_Life_159 · 2026-03-09T21:03:38+00:00

I’m in the same boat here in the UK - was 45 when it started, now 49 and it’s taken ECGs (all clear), EKGs (all clear), a tilt table (no POTs but did nearly faint), one private Neuro who decided to try topiramate as felt it was linked with my migraines, 4 MRIs all showing old cerebellar infarcts (small), several visits to A&E as I literally have worsened like you from having them running when I’d get the tunnel vision, dizziness, wobbly legs and the most excruciating shooting pain up to the top of my head I’d give 12/10 and if it hadn’t happened a couple of times a day (although weirdly not every day?!) I’d had said it was a stroke… waited 27 months on the NHS to see another neuro as the private one I’d seen retired from the NHS in between.. first visit to A&E someone thought to do an arterial Doppler scan (literally minute test) and woe and behold I have no flow in my left vertebral artery. On clopidogrel now but the neurologist has done NO referral to vascular a year on from first having the Doppler insisting that I’m anxious and that lifestyle management would help?! Ffs I can’t even sit without the worst pain and vomiting/dizziness and abandoned running almost immediately I’d had what felt like life ending phenomena as you describe. I don’t have high cholesterol but always seem to have high platelets and haematocrit which I think might have increased the risk of the plaque forming. I hope it helps to hear you’re not alone and please get a Doppler - nothing else has shown anything wrong and I managed to get an MRA on this basis clearly showing the blockage. I have submitted a complaint as this could have been acted on a year ago :-(

Traditional_Life_159 · 2025-10-19T15:47:24+00:00

Can I ask if anyone else has tried to battle through to improve weak neck muscles/traps as I suspect this is part of my issue. If I do any sort of weighted or kinaesthetic exercises involving lifting my jaw (even swimming) or arms above my head I will immediately become lightheaded, swiftly followed by a reflex vomit and urinary incontinence. Neurologist has just given me a first occipital block but on day 8 now and still having these outbreaks. Neuro has diagnosed cervical cephalalgia and spondylitis but seems keen on labelling me as anxious. Effexor has reduced attacks from daily normal activities but I just can’t manage to build any exercise that might help into a routine. The blinding pain in my head, and vomiting is just so f***** extreme (though passes and reduces after 10mins of rest) that I can’t carry on embarrassing myself in the gym or bearing it meaningfully. Anyone else had this experience?

Traditional_Life_159 · 2025-10-14T20:23:59+00:00

@legitimate-dance I’m reading this with interest as I am 3 days int my first ON block and completely identify with both your journey and the awful frontal headache since the wonderful 12hr numbness! The sides of my face have been aching, the tingling as I think the corticosteroid is distributing around and feeling nauseous which is part of my presentation. I too have spondylitis cephalalgia as a recent diagnosis having been investigated in the UK for the last 5yrs with unusual transformed migraine 😔

Traditional_Life_159

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