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New here ... looking for reassurance


I used to think of everything that triggered this chronic phase off originally blamed flu but the truth is it was bound to happen regardless . So as for the hoop it was probably the tip of the iceberg dr s said a migraine brain is always a migraine brain. Before I recovered totally with minor symptoms and managed roller coasters and boats so I’m hopefully for the same this time exercise is good for me I just can’t jump or run :grimacing:


I hadn’t thought about Tai Chi - that’s a good idea! :hearts:


@Onandon03 @turnitaround @Amylouise

Thanks everyone - as well as Tai Chi, I think I will definitely look for a yoga 1-1 or a class near me. My daughter who teaches yoga sent me a link to someone who does yoga and has found it helpful - she has also got Migraine Variant Balance Disorder and she thinks it definitely helped her.


I have never been able to cope with roller coasters or boats! Even when I was a child I avoided scary rides and even a gentle sway on a stationary boat makes me feel light headed :grin: I don’t think I’ll ever go on a cruise holiday!


You reminded me. I’ve always avoided roller coasters, even dodgems made me sick.

As a little girl in infants school in PE the teacher made us all do forward rolls and backward rolls and Forward rolls made me feel really sick so I begged to be excused. The teacher deemed this ridiculous and insisted rather to her regret I think. Pity she hadn’t thought to bring a change of clothes to school with her I thought!

Motion sensitivity is apparently common in people with migraine. I was always car sick/boat sick etc as a child when I suffered what I now know to be migraine. From menarche to menopause I had no migraine, guess my migraine ‘button’ was switched off and I was a wonderful traveller. Slep through several rough Channel Crossings, out off West Wales in a Force 7 Gale. Fine. Hit menopause, migraine returned as vertigo not headaches and the motion sensitivity came back too. C’est la vie.


Checkout the DVDs on Tai Chi in my affiliate-linked section, I personally used the Chris Pei one for ages, it is excellent.


Dr S asked me if I could read in a car - definitely not - another recipe for disaster! He said that people with migraine find that difficult too - interesting. I have two daughters and the one who was most likely to get travel sick was the one who gets migraines. How annoying for you that your migraine button switched on and returned in this format :slightly_frowning_face:. Served your teacher right by the way - she should have listened to you!


Great - thank you! :grin:


I’m no good reading in the car either. Look at a map but not sustained reading. Know motion intolerance is symptomic of migraine but it’s indicative of balance issues really. Suspect all MAVers might suffer it but not all straight migraineurs. With MAVers it’s not surprising, there’s often ear issues so the brain relies on the feet, legs etc (proprioception) and the eyes more for balance So we get in a car and take our feet off stable ground and then bury our head (er, eyes) in a book. What’s left to balance with. Not alot. Pass the bucket please and don’t even mention barley sugars. I had so many as a child in a vain attempt to control sickness, the very smell of them still makes me nauseous.


Motion is my MAIN trigger by the time i have completed my 4 bus journeys to and from work i feel like ive been strapped to a waltzer for an hour. When i was little i was a terrible passenger my mam used to give me sealegs( showing my age) then in my 20s 30s and early 40s i could go anywhere with no problems…then at 49 years old BAM it all came flooding back same time i got a diagnosis of MAV. If i sat still for the rest of my life i would never be ill…but bored to death. How can moving around cause so much distress??? Ive been on sick leave for 2 weeks (whilst trialing Duloxetine but had a bad reaction to it) and will be going back tomorrow. The thought of the buses, computer, lights, busy environment is making me dizzy just at the thought…a vicious circle for me
And my headaches and neck pain are returning due to the Botox treatment wearing off…24 more days until another session. What a life!!!:face_with_head_bandage:
Jo xxx


Oh wow I had no idea Charli was your daughter :slight_smile: we’ve spoken and connected through face book . She’s lovely ! Wow this condition really is hereditary was this your first time with symptoms ? My whole family has migraine but no one has the dizzy stuff so interesting tho how it runs in families x


Hello @Jojo65
4 bus journeys sounds horrendous - you must be in bits by the time you arrive - then, to have to work when conditions cause so much pain and stress must be difficult - I really struggled when I tried to go back to work.
I have been off work since April - I tried to go back in May, but quickly realised I couldn’t hack it and have been signed off until September. My employer has been brilliant, and because I have worked there for 12 years I have had the benefit of full sick pay for 6 months. I don’t know what I would have done otherwise.
Will you be able to try different medication if Duloxetine doesn’t agree with you? The medication I am on is to stop the migraines happening but I still have neck and ear issues.
Jan xx


I struggle map reading too - guaranteed to make me feel sick after about 30 seconds! Luckily my husband has a good sense of direction most of the time and thank goodness for sat navs! I was never very good sitting in the back of the car either until I realised that if I looked through the gap between the two front seats it helped as I could see where we were going. A bit like focusing on the horizon on a boat I guess!


Hi @Amylouise
Sorry - I have confused you. My daughter does Yoga, but she isn’t Charli -she just sent me a link to Charli’s story on a life loved. I have found Charli’s videos very helpful - her voice soothes me straight away. Funnily enough my daughter and Charli both live near each other so maybe their paths will cross at some point.
This was the first time I had anything like the vertigo with pulsating ears , strange head feelings and balance problems. I had headaches in the past which have throbbed and I have had to take some paracetamol and sit /lie down for a while. I didn’t realise they were migraines but in one occasion the headache/upset stomach was triggered by a loud film at the cinema and I had to go home and lie down. :roll_eyes: xx


If the neck and ear issues stem from the migraine and the preventative works it should, in due course. Stop them too.


Still, at least you’ve proved botox works for chronic headaches. Just a case of getting the injection intervals paced right now I suppose. Must admit don’t see how, if it ‘wears off’, it can stop the vertigo/dizziness that’s constant. Would have thought one would need to have it constant in your system. From exp I’ve found the spacing evenly of the meds dose is important. Tweaking mine has improved things as dramatically as iincreased dose.

When your head will wear it do have a read of Dr Hain’s site regarding women, menopause, migraine/MAV and preventatives. There’s some really informative stuff. You said yr neurologist is young, approachable and helpful so it might give you some clues about what to ask her at next appointment. Dr Hain does’t seem to much favour botox but in yr case you may just have already proved otherwise so that’s a step forwards. Helen


Hi Helen and Jan…i can say without doubt my neck pain and headaches have improved A LOT starting the 3rd week after Botox and have gave me relief for almost 9 weeks…that is a massive result for me as i had daily headache ( not migraine) and neck pain and often ear pain regularly. Then 9 weeks virtualy pain free i have this all written down in my diary…but as of yet no improvement in my dizziness, disorientation, and severe motion intolerance…this im hoping to god will go eventually but i have a feeling im going to need a med added to my treatment for that…but which one??? I cant seem to tolerate any of them!!! Today ive taken Zolmitriptan because i feel like my nose is going to burst i can feel it pulsating like a hearbeat and also a bad head this is how i was pre Botox along with all the other MAV symptoms. First day back at work after 2 weeks sick leave…almost 6 months now in total of lost work altogether and feel it wont be the last.
Jo xx


Hv a read of Dr Hain’s womens business stuff. It would seem to me you might be heading for Effexor if you saw him in US. And, after all the previous upsets, guess you’d be breaking open capsules and counting out the little beads so you could start hyper low and slow or may be neurologist could start you on this new injection. Have a read and then go along suitably armed and see what you can get out of her. Got to control the migraine because the rest is just migraine symptoms and should go,but not before the migraine does IMHO. It doesn’t seem to work like that. Helen


I agree…it doesnt seem to work like that.
Has anyone on this forum got rid of the migraine pain…then the dizzies disappeared afterwards??? Because thats my goal…
Jo x


I’m getting there. My migraine pain (pressure) has come down to mild levels this last month and the dizziness is starting to go down as well. It’s been 1.5 years… I still have a ways to go, but I’m seeing improvements each week on my walks, especially when I go up steps and hills or close my eyes while I walk. I hardly notice the rocking sensation anymore for example, just an overall off balance feeling. And the floaty feeling is less as well. I think as the headache comes down vestibular practice and gaze stabilization is key, at least it seems that way for me.


Thats my Neuro’s plan for me…eliminate the headache., neck pain and ear pressure and then VRT. I had bliss from 1st week of June until Sunday gone of being pain free but im ready for Botox treatment number 2…hopefully the more i get the more it will build up in my system…sorry i missed what medication you are taking at the minute?? Im still dizzy everytime im in motion. Only sitting and lying down do i get any rest from it.
Jo x