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New here ... looking for reassurance


#101

Time and patience, pet. I found a diary note the other day which tells me the Propranolol took 8 months almost exactly to stop the rocking completely for short periids which gradually became longer. You’ll get there.


#102

Thanks so much @Onandon03 really reassuring to hear I didn’t realise a med could take so long to work ? Thought it was 3 months . As for patience I agree just so hard when life feels paused … I do keep a diary tho and have done for 6 months :slight_smile:


#103

Wow so the hoop was what kicked yours off ? Over jad episodes as a kid and teenager but never chronic so this was like all my episodes and symptoms sewed in to one big mav explosion !:grimacing: I trust dr s he clearly is the best for this but like you o assumed a pill in 6 weeks would sort me how wrong was I?:grimacing: I can exercise now tho only think I can’t do is HIT or running :weary: so Lots of Walks x


#104

Yes - power hoop was definitely the final straw for me. :slightly_frowning_face: I did have a couple of dizzy spells after I had eaten something when I was at work, which was a couple of days before the power hoop session, but thought it was because my folate levels were low! Later, the same night as the power hoop session, I completely lost it and couldn’t walk in a straight line - I didn’t know what was going on. Luckily I eventually found my way to Dr S who I also trust - things have gone just how he said they would so far and that is very reassuring. x

I also like walking, but it has been too hot to even that for the last 2 weeks. Bring on the rain and slightly cooler temperatures :umbrella: xx


#105

No idea what ‘power hoop’ would be, but I know it doesn’t take much. About 3 months into constant spinning 24/7 and long long before I’d ever heard of MAV or knew I had migraine I went to see a physio who sat me on a gym ball for a few seconds because he was sure my core muscles must be weak and causing my problems. I got off after about 5 seconds. To this day I don’t know how I reached the passenger seat of my husband’s car without falling. It knocked my balance out of days.


#106

Power Hoop involved using a hoola hoop in a small group and doing things like throwing a ball across the room to each other at the same time as keeping the hoop up and spinning. Why did I think I could do it? :roll_eyes: all I really did was shake my head about for 40 minutes and set in motion the worst few months of my life. What an idiot!
The Physio you saw sounds a bit of an idiot too! Sorry maybe I am being mean about the physio, but it does seem a bit odd. that he should think you have weak core muscles? I was lucky that the physio I saw about getting what I thought was ear crystals sorted - one of my doctors said that I had them - told me he thought i needed to see a neurologist.


#107

@Amylouise

Today I read a reference elsewhere might interest you. On patient.info website, historic but se eral references made to propranolol affecting metabolism. No fuller details really but it did say calories were being burnt off at one third of usual, pre-propranolol use rate.

@janb

Thanks for the explanation. Sounds an even better recipe to bring on lurking MAV than my enforced use of the gym ball. The possible triggers are endless. Hindsight’s such an exact science, still we all live, and hopefully learn. I’ve certainly learnt an awful lot more about the workings, or non-workings, of the human mind and body, diet, drugs, psychology and so on since MAV hit and my ‘real’ world shrank rather dramatically. Even learnt how to fight my way around an on line forum! So I don’t suppose any experience is truly wasted.


#108

@Onandon03 @Amylouise

I wish I had never attempted the Power Hoop - I couldn’t do it properly anyway - but I do I agree that hindsight is a wonderful thing! I expect it would have been triggered by something else eventually as there were signs and symptoms that by themselves were totally ignorable until I exerted myself! Also, as you say , I don’t suppose any experience is truly wasted!

Interesting that you found that reference to propranolol slowing down metabolism - I wonder if that is true for pizotifen too? Time to consult my brother I think!


#109

You might just end up saying the same about yoga. If you’ve not been doing it regularly and before MAV it might just prove gruelling and attack inducing. You might find Tai Chi easier. It’s bit more natural, you actually stand on your two legs which is a familiar place for your brain to start. Be warned there are various types and even then practice within a type varies. You need to discuss with the instructor beforehand but look out for Tai Chi for Mature Adults of something similar, usually day-time classes. You don’t need martial arts type.


#110

I agree, FYI restorative yoga has been a good place to start for me.


#111

++ 1 for Tai Chi

Really helped on days when I had bad nausea


#112

Oh wow very interesting regarding prop Helen I def think that’s spot on as I have managed to keep weight stable but it’s been a big effort for me although I’d take that over dizzy crap any day!


#113

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:


#114

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


#115

@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.


#116

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!


#117

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.


#118

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


#119

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!


#120

Great - thank you! :grin: