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Newbie and found the Best Doctor in Boston


#1

Hello Everyone, I am new to the form after being recommended to this forum by my doctor. I am a nurse and had to stop working until I continued my search for answers to this debilitating condition. I finally found the best otoneurologist at the Mass Eye and Ear in Boston, Dr. Steven Rauch, after a year of searching for answers to my symptoms. Before I found Dr. Rauch I was diagnosed with BPPV which for me was the wrong diagnosis as the epley maneuver which is suppose to help this condition was making me worse each day. I had an MRI to check for MS and tumors which came back normal. Dr. Rauch diagnosed MAV. Finally I know what’s wrong with me. My symptoms were vertigo, lightheadedness, dizziness, weird flickering, blurry vision, pain on right side of head alternating with pain on left side of head along with neck pain, motion sickness especially as a car passenger, light sensitive especially in malls and grocery stores, noise sensitivity, motion sensitivity when I move my head especially when its hyperflexed and hyperextended, nausea, balance problems which feels like the ground is moving and which feels like I’m on a boat. When its time for sleep and I get into bed, the bed is moving like I am lying on a waterbed. It takes about 10 minutes before that sensation stops. Dr. Rauch gave me the Migraine diet and it started helping within three weeks. So far I don’t need medication yet. The feeling of dizziness and lightheadedness and other symptoms began to ease up within three weeks. I plan on staying on this diet for awhile until I am somewhat back to feeling normal. I practically lived on all the foods that were on the avoidance list. My diet consisted of avocados, bananas, aged cheese, wine, all nuts, almond milk, Chinese food and lots of other items on the migraine food list that I ate multiple times a day. The foods that I thought were healthy for me were actually making me so sick. I am avoiding the malls and stores with bright fluorescent lights for a while until I get this under control. I eat out a lot with my husband and that has been a nightmare and part of my problem because I don’t have a clue what is in the food I am ordering. If you suffer from motion sickness in the car I have a tip from a physical therapist friend that has helped me. Buy crystallized ginger (has to be crystalized) pieces that you can purchase at Trader Joe or Whole foods and take a piece a half hour to an hour before you get in the car. Works immediately for me and has really helped with the motion sickness feeling. I am so grateful I am a part of this forum where I can learn more about this disorder and where we can share our feelings and help one another.


#2

Awesome, sounds like you are on track to recovering. Glad to hear it! I continue to benefit from the migraine diet as well. I keep testing it by eating stuff that I shouldn’t and keep getting symptoms coming back. In the beginning it was so tough to understand if the diet did anything because I was so chronic with symptoms. Anyways, hope you can make it with diet alone. And yes, ginger is very helpful, I will have to look next time I’m near Trader Joe’s for the crystalized type.


#3

Welcome to the board!

I used to have a terrible, terrible time in malls and big supermarkets. I’m doing pretty good in them now and rarely have issues (I do occasionally have odd moments though). Took a looooong time though, maybe 2.5 years from onset to start to get comfortable again.


#4

Hi, and glad to hear you seem to be getting to grips with MAV in such a positive way. Well done, you. Glad you caught up with yr condition before It got too bad.

Amazing if you can control it with diet alone. That’s brilliant. I think that would happen more if more people got a diagnosis before their condition became really severe and ingrained. The Lauren Kossack story posted recently by @Jessyka_Nettleton shows another one who managed by diet alone. I was misdiagnosed just same as you for 12 years. Sure it happens lots. Retrospectively, following years of research, I can certainly see where the confusion comes from, initially my symptoms were just like BPPV, however they changed as is typical of MAV, but the doctors didn’t see past the original BPPV label.

Absolutely, and certainly plays a huge part in recovery. Avoiding ALL triggers (my soulmate Jojo65, pin back that poor painful ear and listen please). Trigger avoidance was pretty near the only bit of practical MAV advice the migraine specialist neuro ever gave me for my money. I’d say I want to shout it for the rooftops but with MAV imbalance, that’s probably not a very practical idea. Helen


#5

I spent over one hour in the grocery store over a month ago. I felt pretty good that day. Then it started…the dizziness, blurry vision. I got to the register and quickly got all the groceries on the counter and had to hold on. Everything was moving…the ground, the groceries, people. I told myself don’t make a scene. I just barely made it out of there. I threw the groceries in the car and vowed never to return! I got brave. I go in for just a few things with my sunglasses on and leave quickly. Looking into the blue glasses for my computer work and bright lights.


#6

Helen…i listen to all advice you give me because its always 100% correct for me. Im sitting patiently waiting for the green light to start a new med along with my Botox and i promise i will make changes regarding work…i might take some time off work whilst starting this new drug. Last friday i felt almost normal!!! How dare i??? Then back to baseline. I went to tesco and even managed to do shopping!! Am i bragging now??? Today i look and feel like a drunk :roll_eyes:
Jo x


#7

You’re doing great. (I was only joking. And trying to get more plp involved in the conversation and I know you can take a joke, and you’ve done 4 years of this and hv a contribution to make) Fancy a Good Day Friday. Coincided with me there too. Friday was my three in a row. Best ever. Saturday was back to rubbish.

What’s the time line. Tescos, when? Yesterday? Today’s delayed reaction maybe. Trigger avoidance therapy due. When you getting go ahead for new med, eh. Helen


#8

As soon as an e-mail comes from neuro i will let you know straight away…i will need you all to lean on as i am absolute rubbish at taking new meds!!! I will brace myself!!! By the way i still have no headache…got Botox August 3rd and have only 3 relapses of pain since then…next to crush this dizzines🙏
Jo x


#9

Thanks so much for sharing great to hear the diet has helped I am always confused by this . My doctor says to cut the 6 c’s I am curious what dr raunch reccomends ?? Could I ask what’s on the sheet? Food is a trigger but know what and what’s in everything is very hard . Anyways happy to hear it’s helping after 3 weeks that’s amazing !


#10

This is me right altho pitz is slowly helping , had a huge attack yesterday pretty sure it was a soy chai latte that did it but how do you pin point it ? Is it meant to become easier the better u get ? Right now it’s a nightmare :grimacing:


#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.