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Newbie and found the Best Doctor in Boston


#11

Good luck jo :slight_smile: we’re all rooting for u! Altho no pain since August is amazing !


#12

Ahh thanks Amy…dare i ask how the Piz is going?
Jo x


#13

Well I had a great week but I’m coming off propranolol and dosulepin so I expected trouble . Just a few bad days and I’m sure food played a part but nothing too horrendous . Tiredness is gone and hunger has calmed down too. Which is good :slight_smile: so now I’m hoping it works dr S said 6/8 weeks and @Janb said she was very up and down at the start so fingers crossed :slight_smile:


#14

I am glad to hear that you found Dr Rauch to be helpful. I went to see him about three years ago and thought he was terrible. Maybe I caught him on a bad day, but he was very dismissive of me and anything I had to say. Just a really condescending attitude and how dare I question what he was saying to me. Wow I was angry when I left.

I will have to try your trick about the ginger - haven’t heard that one. I live in Austin, home of Whole Foods. We almost have 'em on every corner! Not quite like Boston and Dunkin but almost!

I haven’t found any foods to be triggering for me. It’s all weather and stress and noise. I am using the N1-Headache app and just about have enough data to generate my first report so we’ll see what it says. Interesting that you mentioned almond milk because I use that on my cereal, but there’s hardly any actual almonds in it! Apparently, it’s about 2% almonds (or 30 almonds in an entire half-gallon).


#15

Fantastic…i so hope i get the green light to start a new med…Botox is great for headache element but as we all know thats just the tip of the iceberg! Its whats lurking underneath that i need help with
Keep up the good work Amy
Jo x


#16

It is pretty much the same diet that is listed in the welcome post under diet. Have you seen that diet? Dr. Rauch also recommended two books which I know a lot of people on the forum are reading. “Heal your HeadacheThe 123 Program” by Buchholz & Reich and another one he recommended is The Migraine Brain by Bernstein. I am following the diet and not cheating at all. The dizziness, balance problems with everything moving under and around me has stopped. I still get the weird vision symptoms and sensitivity to light and noise and damp rainy weather brings on a headache but things are definitely improving. I know at some point those symptoms will improve. You have to stay consistent with the diet and keep all other triggers down and things will get better.

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#17

Sorry to hear he didn’t help you at your appointment. He specializes in this MAV disorder and Migraine and able to diagnose people that have had the wrong diagnosis given them. I for one had the wrong diagnosis given to me by another doctor. He was adamant about following the diet. I just did what he said and it worked. I switched from Almond Milk to Hemp Milk. I was drinking Almond milk everyday and eating nuts like crazy. It has made a huge difference cutting out nuts and switching to Hemp Milk. I actually love the flavor of it. The crystalized ginger pieces work like magic for me. Give it a try. I like the Trader Joes brand best. Do you have one near you?


#18

I gave up soy chai teas especially at Starbucks a while ago. Two of the ingredients in the chai syrup is natural flavors and citric acid which are a migraine trigger. The soy is also on the migraine avoidance list. I’m finding that the migraine diet is the best advice I got from my doctor in preventing a lot of these symptoms especially the dizziness and balance issues. I am following the diet to a T and it’s definitely working.


#19

Can I ask (a) were your symptoms constant, 24/7 (b) if so, for low long and © how quickly did the diet work for you and (d) what percentage os symptoms has it controlled so far.

Dr Raunch is World renoun I understand. Somewhere on this forum you will find a Q and A done yrs back between Scott, then leader, and several eminent specialists of which I’m almost sure Dr Rauch is one. Helen


#20

Wow, that is amazing. I’m very glad you are having success. I have similar symptoms to you and am getting only moderate relief from diet or meds—am following the diet but not absolutely strictly. I have continued eating non-MSG tofu and soy and almond milk—those are just about my only lapses. I’m a vegetarian and have always eaten a lot of soy products (for decades), and have never noticed sensitivity to any foods—lights, visual stimulation and noise seem to be my main triggers. Perhaps it’s time to try cutting out soy, tho I feel like I’m running out of things to eat.


#21

I established a link between my childhood ‘sick’ 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 I’ve 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 there’s 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 it’s just another symptom of migraineurs with their hypersensitive brains, Helen


#22

I am seriously at my wits’ end re: what to do, what to try. Then my family, who say don’t just follow advice from the internet, trust the doctors. I’d be glad to, if the doctors’ advice was working. Sigh.


#23

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. You’ve been researching on line so you have some idea what’s out there and you’ve 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, don’t beat yourself up over this any more. You’ve 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 it’s not terminal. Relax. Helen


#24

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. :worried: Jan xx


#25

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 Jan…its fair to say if we could avoid stress and work we would have a better quality of life.
Jo x


#26

Yes this is what dr S said however one down one to go :slight_smile: x


#27

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 didn’t have vertigo, I had lightheadedness and dizziness. It was awful. I couldn’t 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.


#28

Yes. This restriction is lifted once you’ve interacted a little more and achieved the higher trust rating. It’s to protect the site from spammers. Apologies for any inconvenience caused and thank you for your patience.

On reviewing your profile it looks like you may have already graduated :woman_student: to level one (from level zero). Congratulations :wink:

I’ll check but this should mean you can post more.


#29

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 didn’t work in a week they’d 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 “migraine whisperer.” Perhaps will start a new thread about this—is 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 before—it was the being hit by a car that sent it spiralling into crazyland. I’m all “everything’s cool, brain, no problems or stress here, calm down” and meditating/doing yoga/relaxing but brain has not seemed to get the message much yet.


#30

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. :anguished: