I established a link between my childhood āsickā headaches and chocolates at about 12 years of age and hv never eaten chocolate since. Commercially produced red wine went as soon as I was old enough to legally imbibe. Apart from that
Applies to me or so Iāve thought. Although, has it. My MAV started as episodic, occurring a day or two after eating out in a restaurant. Was it the lights, the noise, or something to do with the food? When I originally researched food, histamine intolerance and tyramine came to light but apparently that is supposed to kick in always within hours, more probably within less than one hour and involves a rash, neither of which applied to me. But, then thereās MSG. More than three years in with chronic 24/7 MAV I have often wondered about some hypersensitivity to MSG. But, how many reasons does one need to cause MAV. Mine has a distinctive hormonal link pattern.
Of course the other way to think of hypersensitivity I suppose is just that itās just another symptom of migraineurs with their hypersensitive brains, Helen
I am seriously at my witsā end re: what to do, what to try. Then my family, who say donāt just follow advice from the internet, trust the doctors. Iād be glad to, if the doctorsā advice was working. Sigh.
Oh dear. I must say you sound depressed and overwhelmed by it all. I understand you have an appointment in a month or so with your new neurologist. Youāve been researching on line so you have some idea whatās out there and youāve some idea what they will be talking about. Just sit it out til them, stop trying to solve it on your own, give Mr Google a wide berth and see what the professionals suggest. Put youself in their hands. They should know what drugs are best for you to try next bearing other conditions you may have in mind. Meantime be kind to yourself, donāt beat yourself up over this any more. Youāve had diagnosis. Try to accept it and that it can prove chronic and long-term, and that it has hit you for one reason or another, it will take time to recede but it will recede eventually. Acceptance and some sort of peace of mind will help immensely. Constant anxiety can just make it all seem worse, much worse than it really is. MAV is miserable but itās not terminal. Relax. Helen
Hi Jo
Good to hear that you are having some good days! If it is any comfort I have had a bad week so far - lots of head and ear pressure which I think was a migraine. I think I had managed to eat things with lots of lemon in them followed by a herbal tea with lemon in it so I am blaming that. My fault for eating out and not asking what was in the food - lots of lemon as it happens! Work has been especially stressful this week too so that might not have helped. Jan xx
Ahhh Jan lets hope this episode soon passes and you get back to the way you were. I know you clearly follow the diet and its been helping you but i think stress and work are major triggers unfortunately you cannot avoid these things unlike lemon!! How have you been on your 4x daily Piz? Its hard isnt it Janā¦its fair to say if we could avoid stress and work we would have a better quality of life.
Jo x
I would have got back to you sooner but apparently you can only have so many posts within a certain time frame. How does the posting work? The vertigo, headaches, vision, light and noise sensitivity started in August 2017 and continually got worse. If I didnāt have vertigo, I had lightheadedness and dizziness. It was awful. I couldnāt drive somedays. So it was an everyday occurrence. I started the diet and within a couple of weeks the dizziness/balance problems subsided. So now I am just left with blurry vision and light sensitivity in malls and grocery stores and headaches are just on rainy damp days but all those symptoms are starting to improve. So in answer to your question, it was everyday 24/7. The brain threshold needs to be lowered in order for symptoms to start subsiding.
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Iāll check but this should mean you can post more.
Oh thank you, how kind and compassionate. I think my research impulse has gone into overdrive since my last GP/pharmacist visit, when I was prescribed Stemetil 3x/daily and if it didnāt work in a week theyād put me on lamotrigine. I nixed the Stemetil as soon as I looked it up myself and never picked up the prescription. My spouse does not like the sound of topamax or lamotrigine when I mentioned the possible side effects like permanent memory loss or facial tics, and also that they initially cause users to feel like they are dying. There is an acupuncturist in the city I live who is known as the āmigraine whisperer.ā Perhaps will start a new thread about thisāis said to be miraculous, but requires twice weekly visits for several months and hence a large cash outlay and time commitment. Miracle worker or charlatan? The needles also seem like they would trigger acute attack for me, as happened with my last two dentist visits. My brain was never so hypersensitive beforeāit was the being hit by a car that sent it spiralling into crazyland. Iām all āeverythingās cool, brain, no problems or stress here, calm downā and meditating/doing yoga/relaxing but brain has not seemed to get the message much yet.
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 wouldnāt do that again but I was feeling so good. I came home and unloaded the groceries and started to feel woozy. My brain just canāt handle the bright lights. I knew better.
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 doesnāt subscribe to any dietary restrictions at all, even caffeine. Iām 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, itās as fascinating as ever. Helen
Youād 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. Thereās 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 itās 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 hasnāt 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 arenāt wearing sunglasses indoors. Itās 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. Itās 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.
Hindsightās an exact science. Iāve 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 - havenāt needed them much since. Helen
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Thank you so much !!! Iām gonna have to be stricter I do 6 cs but heal your headache is much harder . Itās just eating out I find hard ! However food does affect me so have to be stricter il def read the book Iāve got huh not the other one . I canāt find the diet on this page @turnitaround could help?
Thanks Helen! I didnāt 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 glassesā¦
I also have a 3 year old that likes to play with daddyās glassesā¦
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 donāt continue with sunglasses. Light sensitivity is my other āspecialityā. Iāve lived like a mole/vampire whatever with MAV. any questions, just ask. Helen
Jan xx
x
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