Thank you for letting me know about the posting. I just came back from Whole Foods. Stayed over an hour in there. I vowed I wouldn’t do that again but I was feeling so good. I came home and unloaded the groceries and started to feel woozy. My brain just can’t handle the bright lights. I knew better.
Got sunglasses? I’ve recently been wearing them most of the day. Gives a nice orange/brown tint to everything
Thanks for that. Interesting. Some plp do do well diet alone it seems. Particularly if the MAV is caught quite early and before it gets too ingrained and intense. Quite strange really because the migraine specialist neuro, I saw doesn’t subscribe to any dietary restrictions at all, even caffeine. I’m UK based but well away from the major eminent specialists like Dr S, Dr Silver etc over here who do. Odd too that the diet works for some but many others find it no use at all which always brings one back to the age old chestnut, what is MAV. Fifteen years in, it’s as fascinating as ever. Helen
You’d certainly need to research that one. I did look at it at some stage. Some plp had some success with headaches I believe. Nothing else. Beware. There’s always plp out there prepared to take your money. I think plp with long-term conditions are seen as cash cows by many. Helen
Too true Jo - work and stress are big triggers ! I am due to retire next July so at least I will be able to hang up my work clothes then. Meanwhile the Piz is doing it’s job, but I think I am doing too much and that is not helping. When I feel ok I rush around like a whirling dervish and then wonder why I suddenly get ear and head trouble. My husband reckons that my idea of resting is falling asleep in the evening when I am exhausted! So on my days off work I shall try to pace myself a bit more.
I can increase the Piz to 5 per day in another 2 weeks but am reluctant to do that unless I get dizzy again, which so far hasn’t happened. I did hope that the 4 per day would work miracles and cure this completely - ever the optimist haha! .Jan xx
I do hope you aren’t wearing sunglasses indoors. It’s possible to buy/get made up a slight (6% is good tint) if needed but, wearing sunglasses indoors will result in dark adaptation. The darker you keep them, the more sensitive your eyes become. Yr eyes get used to it quickly and photophobia gets worse. Some plp find Theraspecs good, You can buy Indoor and Outdoor ones, and other brands too of course. It’s a FL41 lens one would be looking for. Kathleen Digre, one of yr compatriots is pretty much a world authority on photophobia and has written about migraine and photophobia extensively.
Hindsight’s an exact science. I’ve been there, done that, a few times. Can keep getting caught.
Many plp find Theraspecs are good for supermarkets, malls etc. I bought them years back but have never really got on with them. Bit of use when hypersensitive on PC maybe. I did find wraparound light amber anti-glare, meant for driving, glasses useful in certain mixed light situations depths of winter when very sensitive but meds control it more now so - fingers crossed - haven’t needed them much since. Helen
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Thank you so much !!! I’m gonna have to be stricter I do 6 cs but heal your headache is much harder . It’s just eating out I find hard ! However food does affect me so have to be stricter il def read the book I’ve got huh not the other one . I can’t find the diet on this page @turnitaround could help?
Thanks Helen! I didn’t realize this, I will look into it. For me its less about photophobia, its more about exercising my vestibular/proprioception more and giving the visual a rest. My sunglasses are not really that dark, more of just orange/brown tint, I will look at more traditional migraine glasses though. Its just that these sunglasses are like 10 bucks at the gas station, vs 70 bucks for nice migraine glasses…
I also have a 3 year old that likes to play with daddy’s glasses…
The 6 C’s is here:
Is that what you were enquiring about?
Yes, appreciated but what price a new pair of eyes, eh? You can get cheapie light amber antiglare wraparounds in UK. I bought a very cheap pair sunglasses mail order and the amber ones came free!
Please don’t continue with sunglasses. Light sensitivity is my other ‘speciality’. I’ve lived like a mole/vampire whatever with MAV. any questions, just ask. Helen
Okay, I will find something else today. thanks a lot!
Thanks James I wonder I stick to this do you think the hyh is more effective?
It’s very personal and even dependent on the phase of your condition. Sometimes no level of diet adherence will provide relief but at other times it might be the critical factor and the cherry on the cake.
I would experiment with it.
Definitely try caffeine free. That also means no chocolate.
As for the rest I’ve not really found any dizziness triggers personally but YMMV.
Although I definitely have found that after a cheesy pasta meal with perhaps a glass of red wine my tinnitus would significantly worsen but this didn’t affect my balance.
One or two small (!) glasses of wine is probably ok but definitely don’t have more. Hangovers with MAV are definitely not pleasant.
My migraine neuro said not to bother with any diet, not even quitting caffeine but what others have had great success with it, and Dr S insists on it I understand. I rather like the John Hopkins clinic diet cos you are allowed some tea! All diets are a pain if you eat out. Once years ago I had to do prolonged low-fat diet. Discussing the fat content of meals with various restauranteurs, well, I might as well have been talking Ancient Greek! I would demand lean ham, salad no dressing and plain jacket potato, and they regularly still got it wrong. Cannot imagine the reaction you’d get to MSG or low tyramine. Helen
No diet restrictions for me either from my lovely young neurologist…not even raspberry gin🤪 i love her!!!
My first neuro actually suggested adding a small amount of Greek yogurt (forbidden by most migraine diets) to my breakfast to ensure high protein intake first thing in the morning. I alternate that with cottage cheese, which is also high-protein but contains the forbidden carageenan. And today I am having a better than average head day, making me think crazily about what I did not eat yesterday (tomato sauce/ketchup/salsa??). And making me rethink this morning’s plan to change meds of course! On it goes.
I think your right I haven’t touched caffeine in 10 months so already cut that out .
I think your right finding triggers is probably the easiest way and seeing what happens it’s very hard tho when your still symptomatic
Thanks for that Helen. I am continually wearing migralens or sunglasses these days as my light, noise and scent sensitivity seem to have increased since starting VRT. Otherwise some symptoms seem to be reduced on good days!
Do you have any advise for noise sensitivity. Do earplugs work?
Hi. All these strange symptoms we experience are the result of hypersensitivity in our brains and they will continue until the brain’s threshold to triggers has increased sufficiently for them to reduce. This is generally achieved by medication, diet and lifestyle changes combined with trigger avoidance and exercise, the latter to aid compensation. If VRT is causing you to be more noise sensitive, the VRT is obviously the trigger. Many people with unstable MAV find VRT too much stimulation. I did personally. @turnitaround did too. You should discuss this with your provider. I wouldn’t use ear plugs because it’s just masking the problem,. I’d say it’s better to avoid the trigger and seek something, ie meds, diet changes, that will reduce the sensitivity. Obviously if next door has a loud party one evening, they might be useful short-term to keep a migraine away as a stop gap but not in place of finding a cure for the problem. Helen
If you go to the top of the main page and click on “welcome post” then scroll down to diet. Click on “diet” and scroll down until you will see two pages of the diet. One page saying foods to eat and the other page saying foods to avoid.